August 31st - September 5th

At 5am we both got up, showered and Lel had a brew. I was nil by mouth as I was due to be at hospital at 7am for check in at the ‘day surgery’ ward. This felt very odd bearing in mind that I was going in for major surgery! The day surgery waiting room was a small room with a TV on the wall, high windows and was rather warm. People kept being called through to another area or through to another ward for ‘injections’. At around 9am Dr Alex walked through and took us through to the further ward, he told us that I was second on the list for the day therefore would be likely to be after 12 or so. He drew an arrow on my head showing which side required the surgery (so reassuring that they know where they are going to operate). I asked if I could have a small drink of water, bearing in mind I had had nothing since the previous evening, and was told that someone would come and tell me if it was ok.. At 10 or so, Sarah, my consultant anaesthetist called us through to go through a free details with her. I asked the million dollar question - I won’t wake up during surgery will I? as this was the only thing that I was really afraid of! After 10 minutes chat or so we were sat back in the waiting room, and in my bored state I decided to book an overnight stay at Coniston Hall!  At around 1030 a nurse told me I could have a small drink of water, then came through and told us both that it would be 2 or so before I would be going through but that we couldn’t leave the ward. By then, the waiting room was empty and Lel and I were the only ones there. At 11 the afternoon surgery people started to land, 2 new couples who both lived near each other in Chester and were very loud and talkative. Lel and I just wanted to get the day done - as much as it was scary, I just wanted to be called through so it would be moving forward. We sent numerous texts to people telling them that I was late going through. I had written a list for Lel of the people to text when it was all over and I was back from surgery, work people, friends and family so that they were all covered! I had told Lel to go to the Trafford Centre or something when I went under with Jayne as mum and dad were coming over to the hospital and after waiting there all morning, she needed to walk and just get moving a bit.

At around 1.30, a nurse said that there was a bed for me in the next ward bit however it would still be a while before they called be for surgery so if I wanted to wait in the waiting room a little longer as it was hot in the ward and we could move around in the waiting room then they would call me when they needed me. We lasted until around 2 when I became so bored that I asked the next nurse who passed if the bed was ready for me. (All the afternoon surgery people had gone through by this stage.) She took us both straight through and provided be a surgery ‘dress’, going through my identification details as well as measuring me up for surgical stockings. Within 2 minutes of changing my clothes, the trolley for surgery arrived, it felt to be a very quick bye to Lel, bless her, she was so upset and I just wanted to take it away from her and hug her and stay with her. I think it was easier for me as if it all went wrong I wouldn’t know anything, macabre thought I know but that was how I was thinking of it. I also knew that this was very very unlikely and I was in very good hands with Dr Alex and Sarah. The ride to surgery seemed quite short, as we got to the surgery corridor, Sarah stuck her head out of the door, I didn't recognise her in her scrubs and I went in to the pre-theatre anaesthetics room (I never saw the inside of surgery, simply 2 double swing doors in front of the bed that Dr Alex walked out of). Sarah attached 3 pads to my chest to monitor my stats whilst I was in surgery. Dr Alex came out of theatre asked me how I was, I can’t remember my response and said he would see me after it was done. In my slightly confused state, I remember thinking that meant that he wasn’t doing my surgery.. Sarah’s colleague was attempting to get a drip into my artery on my left wrist, attempting as it didn’t want to raise! She was explaining what was going on, that they would put a mild sedative through it, then give me oxygen through the mask. She put the mask over my face which I found mildly claustrophobic, I asked to hold it myself and we discussed the colour of the ceiling - being the exact same colour as that of the pillow cases that Lel had bought me! As well as me thinking of being on the cruise ship on the was into Venice, as a relaxation strategy. At that point the sedative knocked me out!

Next thing I remember was lots of noise and an extreme feeling of sickness. I remember being asked to move my arms and someone saying, look at me, do it like this and me not being able to open my eyes. I kept throwing up, again and again. I heard someone talking about moving me, and tried to say no. They were saying they would do it very slowly and very gently, I kept throwing up. As we moved down the corridor from recovery, there were different coloured lights even through my closed eyelids. The bed stopped and they got me to a slide board to move me onto the new bed, as they moved me across I remember going ‘urgh’ as I got onto the new bed. I continued to throw up. I had no concept of time, I was asking for Lel but saying that I wanted ‘bear’, I’m sure the staff had no idea what I was talking about. Then Lel was there with me, I wanted her to stay for ages and told her that there should be no problem with that as it was only 6 or so, she told me that it was 10pm and I had only come up recently as I was so ill in recovery. She had to go and leave and I hated it. I was rather vacant whilst she was there but I didn't really have much clue as to what was going on. I was still throwing up and felt so so ill. As the night progressed I thought I was having a fit, my right arm was twitchy and my left arm was moving uncontrollably. I remember thinking that I was having an epileptic fit, one of the girls that I work with has epilepsy as well as me being told that brain surgery could cause epilepsy. I think, in hind sight, I was having a panic attack and i tried to call for the nurse on the buzzer. I couldn’t find the buzzer and ended up moving the top of the bed and foot of the bed up and down. Whether I called out for the nurse or not, I’m not sure but one arrived as I was getting more and more agitated. She sat and stroked my arm and talked to me until I went to sleep.  I was struggling with vomiting still, the nurse gave me a tablet which came back up very quickly, then put a patch behind my ear which was meant to stop me throwing up. This still didn’t work.  I was almost constantly vomiting, I was more aware of this than anything else. Soon after the nurse spoke with one of the doctors and I had an anti sickness drug through my drip. They stopped giving me morphine and started me on oxycodone as a pain reliever which, having given me the anti sickness through my drip, I could keep down. I wasn’t really aware of much during the day however do remember Dr Alex coming in and telling me that they had managed to remove most of the tumour but had had to leave a small bit as it was wrapped round a vein and had it been removed it could have caused left side paralysis. I stared at the clock on the wall as he told me this and tried not to cry. I had really hoped that he would be able to get it all out but understood why they didn’t. He told me that he wouldn’t be in the following day as he was revising for an exam on Monday. The rest of the day consisted of a nurse and a trainee nurse coming round every half hour or so to ask me to lift my arms, move my legs as well as asking me who the queen was, what year it was and where I was. Around lunchtime (I think), the phone rang next to my bed and it was Lel who was wanting to see how I was. It was lovely to hear her voice, apparently I told her that I had eaten half a banana! Towards the afternoon, it was decided that I would be moved from HDU as I was now not so ill and could go to a general ward - they had also put me in HDU to start with as there were no other beds anywhere - always good when you have been booked over a week for your surgery. 

I was moved back to B8 (the same ward that I had been on when I was first in hospital) and taken there however on this occasion I was in the wing near the nurses station. I was surprised to see Dr Alex who came round to ask how I was, I told him that I had not expected to see him, he said he wanted to check on me and the other person that he operated on the previous day. I was really reassured to see him and as much as I didn’t feel great, did feel better seeing him. They were all very pleased with my recovery now that I was off the morphine but now that I was just on the codeine and paracetamol they wanted to keep me in a bit longer due to my bad reaction. I remember Lel and mum and dad coming to see me briefly and me being confused and thinking that I was in the broom cupboard. (On the other wing of the ward, the area where my bed was, was a storage cupboard!) I was on regular medication, every 3 hours for the morphine type drug with codeine and paracetamol available should I need it. I was also on steroids, anti sickness drugs, drugs to protect my stomach from the medication as well as softeners to counteract the codeine. I was checked on regularly overnight and didn’t get much sleep, I still had my ‘leg inflators’ on which kept my blood pressure at a good level which about every 5 minutes or so would inflate with a buzz and get tight around both legs however I was shattered and just dozed.

Friday morning the nurses offered me a bed bath, I was very grateful for this and accepted. They removed my catheter that I had had put in when I was unconscious during surgery as well as my ‘leg inflators’, putting me in surgical socks instead. Alison came round during the day and said she wanted me to get on my feet and took me for a walk out of the ward for 5 minutes to give me a change of scenery and to get me moving. We walked about 200 metres or so before I was tired and sat on one of the chairs on the corridor before we turned and walked back. She was very impressed with how well I was doing. During the day, Dr Alex came round. I was very surprised to see him, but very pleased that he had made the effort to come in, I asked him how his exam had gone, he seemed impressed that I had remembered that he had one, I suppose it showed that my memory was still fine! The nurses, during the day decided that I would be moved back to the other area of the ward, to the bed where I had first been in when I had been on the ward 2 weeks previously. In the afternoon I was told that I would need another MRI scan to see what was ‘left in there’. Lel, as usual was with me, we waited for the porter and wheelchair and I had asked for my head bandage to stay on for this. The thought of an MRI scan and my head being rattled around without the bandage on really scared me. Following the MRI, I waited for the porter again to take me back up to the ward with Lel, he said how well I was doing (although I didn’t feel it as the time). As the evening came, so did mum & dad. Whilst they were with me, we loaded my bed up and a porter came onto the ward and moved me round to the other wing. Four of the people who had been on the ward when I was first in there were still there however, with my massive bandage round my head, they didn’t recognise me. It was nice to see the same nurses again and they were all very kind and caring again. This side of the ward was a little more relaxed and Lel managed to stay with me until 10 or so. Around 11pm my stats were checked, letting me go to sleep soon after. I slept better, not having the socks on as well as having codeine late on in the evening. It helped to knock me out.  I was woken around 4am by a nurse doing my stats again and lay awake until around 6am when I got up to go in the shower. The nurse asked if I was safe and stable to do this. I told them that I had no balance issues and asked for something to be tied around my dressing on my arm to keep it dry. I still had my head bandage on but told them I would keep my head out of the shower. They were fine with this and I felt much better showering and having a bit of a wash clean.

During the day Lel arrived around 8am to keep me company and walked onto the ward as she had been doing the previous days. The ward manager for the day didn’t know her and was surprised, coming to ask her who she was. They were fine with her being with me and I was very glad that they were as the weekend Drs came round and, whilst discussing me quite loudly, had the computer screen turned towards us both. This was quite shocking as it showed what appeared to us to be a lot of tumour still in situ. Neither Dr. really spoke to us however they did say that my bandage should come off during the day as it had been put on initially as a tight compression bandage to assist with preventing any swelling from the operation. As the day went on, I waited for a nurse to be available to take my bandage off. It came off very easily and didn't hurt, other than where the blood was stuck to the under dressing. For some weird reason, as soon as it was off, I wanted to look in the mirror, I have no idea why! Lel took me straight into the bathroom where I looked into the mirror and promptly burst into tears. I hated how it looked. Only the smallest amount had been shaved around the cut area but by seeing it, it became real as to what had happened. And it was a really long cut from the middle of my forehead to the front of my ear.  Mr Leach had told me initially how big it was going to be, but seeing it in the mirror, gave me a real shock! We both had a cry then headed back to the ward for a bit. Again, as the afternoon and evening came, so did mum and dad and a decision to move me again to another ward. As we started to pack down I developed really bad constipation to the extent that I was in agony. I was asking repeatedly for something to settle it, whether a laxative or an enema however they were telling me that they were moving me onto another ward and they would put a note on my file so as soon as we got there it would be done. I felt like I had a knife in my lower gut, as I hadn’t been to the bathroom since the operation. A porter came to move me to ward H7 where I was initially meant to have gone post surgery (had there a)been a bed and b)me not been so ill). As I was wheeled between the 2 wards, he explained that we were going past the surgery area and I recognised the corridor with the coloured panels. He also said that I was doing amazingly well and that people who come in for an ingrowing toenail took longer to come round than I did! He took me to a private room opposite the nurses station, I don't know how I got that but I was definitely lucky! The thought at that point of not hearing anyone snoring, or someone listening at the curtain when the doctor came round was wonderful! I was still in agony however and waiting for a nurse to come. It was half 6 or so when I got onto the ward which was staff changeover time so I had to wait, and wait. At around half 8 a nurse came and offered me an enema, I won’t go into the details but afterwards I felt much much better. Lel, mum & dad had left by the time this was done however one of the nurses popped in with a couple of bottles of orange juice that mum had sent for me. Around 9 or so I settled for be, the nurse came in around 10:30 to check my temperature etc and that was it for the night. 

At around 5:30, the morning nurse came in to do my checks again. I had woken at around 4 or so having heard the beeper go off and staff go running and not gone back to sleep. Being Sunday, Lel came back on the ward during the day to see me around lunch time as opposed to the official 4pm, she brought shower caps for me as I really wanted a shower and I was scared about getting my scar wet. The private room had an ensuite and I was really wanting a shower where I could have a good wash. Lunch wasn’t great so I asked mum to bring a sweetcorn chowder or something that could travel in a flask easily. It was difficult as they didn’t understand the concept of veganism (I was told that tuna was ok for vegans) and was having either soup or orange juice followed by a jacket potato and salad for every meal and a piece of fruit if they could find one for me. They were struggling with me for breakfast as I didn’t want cereal or toast with butter on - I was asking for a banana and dry wholemeal toast and this was hard for them. Twice I was brought white with butter on which I left to one side. I was really appreciating the juices that mum brought. Mid afternoon Em, Isla, mum & dad came over. I had a short walk down to the cafe where Isla had come to see me and kept my head turned away from her so that she could just see my hair and not the cut. Everyone was telling me that it was really neat but I couldn’t look at it so I didn’t expect her to be able to. We had 10 minutes or so down there before we all went back up to my room.  Everyone left leaving me with Lel for a while. I was tired after all the visitors and think I dozed for a bit before she left. I had a quiet nights sleep, waking around 5am to have my checks done again.

On the Monday I managed to get a banana and plain toast for breakfast. Lel had gone to work as I was determined for her to have some normality return to her life. We had agreed that she would run direct to the hospital at the end of her day (she was working an 8-3 with no breaks) so I was having a quiet morning. Around 2, mum & dad came to see me. I was still waiting for occupational health or any doctors as no-one had seen me at all during the day.  I watched TV on my phone, Alison came to see me and had a chat as to how I was doing. I remember getting a bit upset with her about the tumour that had been left it but as she said, we had been warned that this might happen when we first saw Mr Leach. I had totally forgotten about this at the time Dr Alex told me that it was the better of the two options. She told me that they were waiting on occupational health to do an assessment on me and once this had been done, they could look to get me discharged. Soon after they arrived, Mr Leach and Dr Alex came in, I don’t really remember the conversation, however remember asking them about the size of the tumour and being told that it would have filled the hospital beaker and overflowed from it. Mr Leach told me that the histology results would be in from it within 10-15 working days, at which point we would be called back to see him as to what would be happening next. I remember saying ‘no-one has been to see me yet regarding me going home’. Mr Leach said ‘will we not do?’ Dr Alex didn’t say anything, Mr Leach did the talking with Dr Alex standing back and deferring to him. Mr Leach said that he was happy with me going home, as soon as physiotherapy had seen me. Very shortly after they left, 2 physiotherapists came in and took me for a walk to see how I would do on the steps. I had no problems with this and came back up to the room where Alison was talking to mum & dad. She reacted as though I had been really quick and the physios said they were both very pleased and had no worries for me.  I text Lel and told her that I would be coming home but that she should still head to the hospital as it would take a while for my discharge.  She arrived half 3 or so, and soon after the nurse came in with my medication that I would need on discharge. I was being sent home with codeine, paracetamol, ‘softeners’, steroids and tablets to protect my stomach from all the medication. I received a large bag on medication and was packed off with a letter telling me if I felt ill or if anything went awry to contact ward H7 where I had been discharged from. A district nurse would come in 7 days to take out my stitches, something I was rather frightened of. As much as I wanted to go home, I was a little worried, more about the car journey home than being back home as I knew that mum & dad were still staying with me for a while and Lel was there by my side the whole time. The car journey was so painful, every bump in the road went through my head and I couldn’t focus on anything. After the surgery I had had difficulty with my long term vision, the doctors told me that it would heal within 6-8 weeks and if it was no better after this to go to the opticians but this left me feeling seasick when I turned my head.