So, where were we?? Waiting to hear from the admissions office about having the portocath put in.....
I heard from them the following day: Thursday. They telephoned and asked if I could be at the hospital by 4.30pm at a different ward to the one I had been sent to originally. I choked out a 'yes'.
My first sugery - the first cutting into my body - my perfect, mostly unblemished intact skin was going to be invaded, cut, scarred so a foreign, man-made, unnatural object could be put into me. And I was somehow agreeing to this although the thought of having this thing that didn't belong inside my body was making me want to run far away.
I can't quite explain to you the horror of this for me - perhaps if I tell you that I have never had my ears pierced and that I can't write on my hands because I basically feel that my body is a perfect creation that shouldn't be meddled with. The idea that putting holes in myself or putting substances on it that can be absorbed that are not designed to be in contact with your body - it frightens me, it threatens my physical integrity, I can't see why it won't damage me. Can you see what I'm saying? It probably just sounds paranoid - but it's not - it's about my physical integrity, it's about my relationship with my body, it's about feeling whole.
But, I was told this was going to improve the chemotherapy experience, which I felt I couldn't cope with. So, I said 'yes'.
I had to ask what I should bring with me: I had never had to stay in a hospital before. So I packed up overnight gear, a book and gave my mum my mobile phone and we set off for the Royal Free. Once there we made our way to Moore ward which is the cancer ward and, as such, is the most frightening place I've ever been. There are people in there who are obviously very sick, who are probably going to die from their cancer. People who are white and wan and palid, wearing turbans to cover bald heads, lying back with barely the strength to sit up in bed. I wanted to run out again as soon as we arrived but my mum and I made our way to the nurses station and I told them who I was: they looked a bit blank but then someone recognised my name and they showed me to a bed in a four person room. We waited for someone to come and admit me. I sat on the bed, my mum sat on the plastic-covered chair which makes you sweaty. The place was like a sauna but a lot less nice - I was absolutely sweltering and pretty soon, my head began to ache. We sat around for 40 minutes or so and then my mum went off to try and call home to get hold of my dad who hadn't been home when the call from the hospital came and would get back to flat and not know where we were. She came back: no luck and noone had come anywhere near me. Eventually a nurse came by and started filling in some forms about my general health and did I wear glasses or smoke and were my bowels regular: don't you just love medical people.....?
Around this point, my memory goes hazy: I remember my head getting worse and worse, I remember my dad eventually turned up, I remember the woman in the bed next to me had about 5 or 6 visitors whose mobile phones kept going off despite the fact they were supposed to be switched off and they were all talking really loudly and arguing with each other and walking back and forth and in and out of the room. The other people in my room were an older woman who had terrible back pain and was on morphine. I remember her daughter massaging her mothers feet with olive oil. And the fourth woman stayed mostly behind her curtains, she had a visitor but she looked very unwell and uncomfortable.
Eventually visiting hours ended and my parents left.
My parents leaving was terrible: I wasn't going to see them again until after the sugery and they were just leaving me there on my own! I'm sure they didn't want to leave but they couldn't stay. So, I got into my pyjamas and got into my white, crisp bed and tried to read. In the meantime the obnoxious visitors still hadn't left even though it was past time and then the ill-looking woman went into the bathroom and I could hear her throwing up and crying quietly. Finally someone came and ushered out the obnoxious ones and the woman came out of the bathroom and *finally* a doctor turned up to admit me and to take some blood. She was a nice, young, female doctor. She used a tiny gauge needle to take the blood which I barely felt and she asked how I was and I said something like 'don't ask' and she asked me if I want to see a portocath. I very tentatively agreed - I didn't really want to but I'm hopeless at saying 'no' and besides, I thought it might just be one of those things I had to do. She went over to the ill-looking woman behind her curtains and spoke to her and then came back to me and took me over. At this point I was really regreting agreeing - I didn't want to see
this woman: I had heard her misery and pain and was scared to see her too closely. But she showed me her port and told me that it was a really good thing, she liked it. It didn't look bad, just a slightly shiny, white scar and not much else. I went back to my bed and tried to sleep.
Part of me thought: I could just walk out of here, walk out of this room, out of this hospital, out into the world and just keep going for evermore. I went and stood at the doorway of the room and took a step into the hall but I didn't leave, I went back to bed.
Meanwhile: noone had told me anything much, I didn't know exactly what time my surgery would be although I think I was early-ish on the list. I hadn't been told to not eat ot drink anything or at what point I should stop eating or drinking. Since I didn't know I didn't have anything, even water, after midnight. I don't know why I didn't ask. Well, I do. Probably because I hardly saw any nursing or medical staff and because I felt totally cowed by them. They were frightening people and I didn't dare to ask questions because I couldn't cope with what I might hear.
In the morning I turned down breakfast and the woman bringing round the breakfast trolley seemed to think this was strange, I sat there unable to concentrate on my book getting more and more anxious. I had nothing to do but sit there and wait - nothing could occupy me enough and I didn't have the concentration to let anything occupy me. I just sat there and tried to breathe. The anaesthetist came round to ask questions - she was kind and agreed that I could have a small cup of water since I hadn't had anything since the previous night. This was great since my head was still bad and I suspect it was due to dehydration. Eventually the oncologist and her team came into my room on their rounds - she saw me there and stopped to speak to me: I have no idea what I said but I was so high on anxiety by then that I probably said 'don't ask' or something sarcastic but whatever I said was enough to indicate that I was in a terrible state: she ordered the nurse to give me some Lorazepam. Trish, my breastcare nurse, asked if I wanted the man who did massage to stop by and I agreed although I hadn't met him and I wasn't sure I wanted to have to meet someone new right this moment but thankfully, I did agree. I changed into that special gown - I had to ask the nurse which way round it went: she acted like I was obviously mentally deficient if I had to ask that question and then Keith turned up. Bless him: I have never met anyone more able to make you feel safe and comfortable and at ease. He was the total antithesis of everyone else in that place at that time - I actually felt that he cared about me and that he recognised how terrified I was and that he realised that it was important to try and help me. That it wasn't just something that happened and was transitory and therefore didn't
mean anything. I felt that everyone else just thought that it was normal to feel frightened and that it should just be ignored. Keith saw that I was so frightened it was deconstructing me: I couldn't speak in sentences, I was on the verge of hysterical tears; I was in total 'fight or flight' mode and since I couldn't do either of those things I was actually falling apart, deconstructing, losing myself. I was in some primitive place where feelings ruled and logic didn't exist. I couldn't reassure myself because I had no ability to see that this would end, would pass. I was swallowed by it. And somehow, somewhere, Keith recognised this and acted. He massaged my feet and legs which was lovely and chatted to me and distracted me and reassured me. He probably doesn't even remember this day but it is etched on my memory because it was such an act of personal kindness from someone I had never met before.
Then the porter arrived to take me down to the theatre. A rather different theatre to the one I was used to performing in! One of the nurses came down with me and my chart. We went down in an elevator and emerged on the theatre level: it was really cold down there and it looked a bit like a warehouse with corridors: lots of trolleys of things and stuff piled up. And I was wheeled into a little room with a couple of theatre nurses in. They started to get me ready and I asked one of them what was going to happen, she seemed surprised at my question. Why should this be surprising?? Why wouldn't I want to know what the proceedure was going to be?? It seemed like every time I asked a question it was met with the attitude that I must be mentally slow if I had to ask this - like I was supposed to know how everything worked, the procedures, the culture already. But I didn't -
how was I supposed to know this?? And why I should I be made to feel that I am stupid because I don't know?
The anaesthetist turned up and she put a cannula in my wrist and injected something into it and then,
.....nothing.....
I started to be aware of noise and people talking around me. I was sort of half lying, half sitting - propped up in a way. I felt floppy, weak and sick. Someone noticed I was coming round and she asked me how I was and I told her I felt sick, she injected something into the IV line, my shoulder area was hurting and she brought me some soluble paracetamol and a straw and I gradually managed to drink it. It's funny really - because I have quite clear aural memories of the recovery room; of hearing people talking around me but hardly any visual memories. I'm not really sure what the room looked like or what the nurse looked like; although I know her name: Cherry. I asked her who she was - I hate not knowing who people are or what's going on.
Once I was feeling a bit better and was more alert I was taken back to the ward and left to sleep off the rest of the anaesthetic which I did for a while until the woman with the obnoxious family had about 6 friends from her school-days turn up to visit her - and they started shrieking and 'oohing' and rattling on at a mile a minute. Now my head felt as if the world was cotton-wool around me, things were hazy and tender and all this noise was terrible. Some of the other people in the room were very kind and asked the group to quieten down - pointing out that I'd just returned from surgery but it didn't really make a lot of difference. Nurses came and asked them to be a little quieter and finally the ward manager came and told them that they had to leave; that it wasn't fair to other patients and he offered them another room to go to. Now, since I'd come back from the recovery room the curtains around my bed and been partially closed - so I could see out a little but was mostly enclosed. As these women started to leave 2 of them came into my little area and started asking me if I minded them being there, if they were making too much noise. I was so *British* - I should have said 'you are totally inconsiderate people, I would like you to leave, I am not feeling well and you are disturbing me' but of course, I just mumbled and said something noncommital. Even now, I cannot help but seethe when I think about these two women: I feel like they not only were inconsiderate but they invaded my personal space at a time when I was unable to adequately respond or stick up for myself. Thankfully the ward manager did send them away - I don't know his name but I am so grateful to him for that.
During this time that I was recovering the nurses told me that my parents had rung to ask about me and that they'd told them not to come until later when I was more awake: I was so mad about that and again, I did not say anything, but I wanted my parents there *then* - I wanted to know that even though I wasn't very alert that they were there and then they would have looked out for me and they would have told those horrid people to be quiet. And they would have come and sat with me if I'd been able to tell them I wanted them; if they hadn't been told by that nurse not to come. I wanted my parents. Eventually, they turned up and the doctors came by and asked if I wanted to go home to which I responded in double-quick time 'yes!' I couldn't stand even thinking about another night in there so they started to arrange my discharge.
When my parents arrived the nurses disconnected me from the drip I'd been on and my mum helped me up so I could use the toilet. I'd wanted to go for hours but I'd been so cowed by all those people and I'd felt so lost and alone that I hadn't dared to ask anyone to help me get up. I could hardly move myself from a lying to a sitting position because my shoulder was so stiff: it was impossible to sit up without using those upper chest muscles to initiate the movement. Next, my mum helped me to get dressed and I realised at that point that I couldn't get back into the top I'd been wearing when I came in - it pulled over my head and was quite fitted so I just had to put on my fleece zipper top. Even putting my left arm into my sleeve was really hard and uncomfortable. It was a little odd at this time because the woman in the next bed had come back with one friend and they were obviously Jewish and it was Friday night: Shabbat. So her friend had brought in the special meal and they were singing quietly to themselves. A sort of peculiar juxtaposition - not an experience you expect to share in a hospital. But definitely an improvement on earlier. The exertion of getting up and dressed made me go all dizzy and I suddenly felt this wave of nausea wash over me: I had to lie back down for a few minutes. But I was determined to get home that night and nothing was going to keep me here any longer: I hated it, I was frightened, in pain, lost, overwhelmed, I'd consistently been made to feel stupid because I didn't know what to expect: because I didn't know what hospital routines were, since I didn't know what happened when I had surgery, or how to wear a gown; I wanted to
go home.I WAS GOING HOME.
The nurse came and said I could go and she brought me some painkillers: paracetamol and codeine and some anti-sickness medication: cyclizine to take home and some dressing kits and said that we should change the dressing every couple of days and that the stitches should come out in 7 to 10 days. My dad fetched a wheelchair and called a cab and we went home.
The cab home was agonising - every time we went over a speed bump it jolted my whole shoulder and a stab of pain went through me. I felt so fragile and broken. When we reached home it was dark, my parents helped me up the steps to my flat. One of my neighbours: Kissime, came out to see what was happening - I think she must have been totally alarmed because I was as white as a sheet, shuffling along the walkway, with obvious stitches at my neck. I hadn't told her what was happening and I didn't then either. I couldn't bear to have my neighbours being nice and offering to help and things like that. Too proud for my own good.
So I got home: my mum lent me her pyjamas because I didn't have any that buttoned down the front and I couldn't get into anything that pulled over my head. They were too short in the legs and the arms for me. I got into bed, I was propped up on a pile of pillows so that I didn't have so far to sit up if I wanted to get up. I was so relieved to be at home, in my own bed - I slept.
