Wednesday, March 29, 2006


I was sent home from the hospital on the Friday evening. I really don't remember that weekend. I was very groggy and uncomfortable. My shoulder was very stiff and I was walking around like a hunchback: I didn't want to stand upright because it pulled on the stitches and was uncomfortable. Having a bath was awkward because I couldn't get the area wet - so I could only really wash my lower half and I couldn't get out of the damn bath once I'd gotten in it. My bath is a deep enamel one and requires strength in two arms to push oneself up to standing position to clamber out. My mum was having to help me wash and help me get out. It must have been strange for her to be bathing her daughter again - and to have to see my adult body and know that it was diseased and was going to be cut apart. The flesh she gave birth to. I often sat on the edge of the bath and lifted my legs over the side because I was so unsteady on my feet -- and there are lots of hard, pointy, sticky-out-y things in bathrooms to impale oneself on. I couldn't wash my hair either because we have no shower and I couldn't bend over to put my head in the sink or lie back in the bath. So I felt all grimy and horrible. The anaesthetic had left me feeling quite nauseous on and off - especially when moving around. I think I did lots of sleeping. Getting out of bed was pretty awkward too. I ended up rolling sideways to try to egt out - that, or using my legs to lever myself up. Noone tells you that things like this are going to be a problem! I couldn't get into clothes. I couldn't get on a bra or a vest top so I was wandering around naked under a button-down shirt - a little chilly! My mum went out and bought me a nightshirt that buttoned all the way down the front but I had to be helped into that too. I barely went out of the flat at this time - I was so unsteady on my feet. My dad kept helping me to try and straighten up but I couldn't stay like that for too long.

Then, when it came time to change the dressing, my dad did that ( I should perhaps say here that my father is a university lecturer in the area of landscape - absolutely no medical background). I was standing in the kitchen (quite why we chose the kitchen escapes me now - it made sense at the time!) and dad unwrapped the dressing kit we'd been given. Noone had showed us how to do it but there was a plastic sachet of saline in there and lots of gauze squares. First though, we had to get the old dressing off - which was actually transparent, plastic film called Tegaderm which meant you could see the incision and the stitches through it - that really made me feel a bit peculiar. But the wound was a little semi-circle about an inch across. It was stitched inside so you couldn't see the stitches - just the ends of them at either end where a 'tail' of the thread stuck out and had two beads threaded on it - one round and one square bead. This looked totally odd to me. But it's left a very neat scar with only the incision line - no stitch marks. There was also an inch and a half incision along my neckline where they were supposed to put the tube into the vein and finally a third, tiny incision with a stitch in, between the other two incisions - which I was totally surpsied by. I'd been told there would only be two incisions and noone explained what it was about and for some reason I did not ask. Anyway, we ended up pouring the saline all over the area to try and clean in - of course, it went everywhere - it was running down my body: I was soaked and then very gently dabbed with the gauze and then stuck another dressing over it all. I was shaking / trembling by the time he'd done it. It took so much self control - I didn't want it to be touched - it was painful and scary. It was a hole into the inside of my body and I was trying to work out how to live with the uneasiness that caused me and I didn't want it messed with any further. But we did it and I sat on a chair in the kitchen to recover - limp and dishrag spring to mind.

After the weekend I was still really groggy and kept sleeping all the time, my shoulder wasn't feeling any better and I was still doing my hunchback of Notre-Dame impression. On the Thursday night I went to bed pretty early - I wasn't feeling too brilliant - make that even less brilliant. I felt a bit warm. I woke up at three in the morning - I was going hot and cold. Bad news. When I started chemotherapy one of the warnings I'd been given had been to keep an eye on my temperature because one side effect from the chemo is falling white blood cell counts and these are what protect you from infection. If you get an infection then your body is less able to fight it and if my temperature went above 38 degrees centigrade (100 degrees fahrenheit) then we were to ring the hospital PDQ. I had a thermometer next to my bed - guess what? You got it, 38 degrees c. Next problem, getting the attention of my parents asleep in the next room. I couldn't get up - I didn't even try - I tried calling out but I could barely make any noise. I started trying to throw things at the wall. After a little time, my dad heard me and came in and my mum came in. We took my temperature again - still 38 - they fished out my record book that showed what treatment I'd had and gave the warning signs to look for. We decided to wait an hour and take the temperature again as per instructions. My parents sponged me down with a damp washcloth. I was shivering and on fire at the same time - I was shuddering. When we took my temperature again it was still 38 - we rang the hospital and they told me to come in to A&E and the oncall doctor for the oncology ward would check me out. My parents got up and dressed and called a taxi. They bundled me into a mixture of clothes. I was wearing a night shirt tucked into scabby tracksuit bottoms with a ratty cardigan over the top and wearing felted wool clogs and I was shaking. They took me to the hospital.

Tune in later for the next instalment of this saga - it lasts for days so it'll go on a bit: you've been warned.

Sunday, March 26, 2006

My first surgery

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,

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.
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.

Sunday, March 12, 2006

Dr Newby and the portocath

Phew! That was a veerrry long post yesterday - congratulations to anyone, including me, who managed to read it all.....
A year ago yesterday was the day they put in the portocath. But I don't want to tell that story until I tell the Dr Newby bit of the story. So, maybe I should just do that and try to catch up a little bit.

The week after my first chemo treatment I had to go back to the oncology clinic for blood tests to check my white blood cell count. I think all kinds of chemo treatment kill off white blood cells - and white blood cells are what power your immune system and fights off infection. So it's really important to keep an eye on them. Usually, the doctors would expect to see the lowest white blood cell count 7 to 10 days after the chemo treatment and then the cells start to replace themselves and it should rise again. For this reason I was warned to avoid crowded places: like the London Underground, theatres, places with lots of children, anyone who was sick, to avoid any sources of mould (careful watching of the fruitbowl and being careful with flowers in water: a problem because of course the first thing many people did on hearing I was sick was send or bring me flowers), avoid raw eggs, pate and make sure all food is properly cooked. So, I was due back a week later to check how my blood counts were reacting to the treatment.

So, blood room again......ick.....hundreds of people waiting around with slips of paper, the 'take a number and wait for the rest of your life' type of queue. Fortunately I had the slips of paper that basically said ASAP (I think it says something like 'Doctor waiting') so I didn't have to wait more than a few minutes - unfortunately that meant everyone waiting staring at me, daggers drawn, seething and, well if they hadn't all been British and stoic then it would have been like that and there would have been a riot. (well, I might be exagerating a bit - but it felt quite like that.) So I get in there and they have those funny chairs with wide, downward sloping arms and they put the stretchy thing around your arm to bring up the veins. It's funny, none of the phebotomists (or whatever they're called) every went 'oh dear' mutter mutter about my veins - they just got on with it. I guess it's different to take some blood to putting in a cannula that needs to last at least a few hours and allow movement. The blood taking was all done quite quickly and I studiously stared in the other direction - although you have to be careful with that since there's about three other people also having blood taken in the same room at the same time and if you look too studiously in the other direction you end up staring at them...and then they give you your little phials of blood to take to the place where they test it.


Is it just me or is this freaky?? I find it quite alarming, freaky and it makes my skin crawl a bit, to be honest. But, I did as instructed and handed my stuff over and hightailed it back to the clinic to discover: AJ ISN'T THERE TODAY! She's in a meeting or something, or somewhere, but SHE'S NOT THERE!
Not good for me: I'm not good at meeting new people, especially in stressful situations (like the last 2 weeks), in fact, in the last two weeks I've met more medical people than I've ever seen in my life before and it's seriously disturbing me. I am not happy that I am going to have to see someone else today. And not only that, because they're a doctor down they're also running seriously late - an hour and a half late? So I have got a lot of sitting and waiting and panicking to do - argh!

My mum is with me. We sit and wait. And wait. And wait. And eventually, we get called in to see Jackie Newby. My memories of this are hazy I was on a bit of an anxiety jag by this point. Dr Newby was very nice, that I do remember. My blood counts were fine - a bit lowered but not seriously so. How was I feeling? How were the side effects? Well, I this point I began my spiel: how awful it had been, how I could not, would not do it like that again. I showed off my enormous bruise. Trish was in the room at this time too. Trisha was/is my breast care nurse, she's a nurse specialist and she is very nice and very busy. But she was there that day to check how I was getting on.
The solution to this? Lorazepam on the morning before chemo - just one, just on those days to keep the anxiety under control. It turns out that some of the anxiety after the chemo is due to the steroids. They make some people feel very wakeful, energetic; they make me feel anxious, that twitchy anxiety where you twitch bits of your body constantly and feel keyed up. The solution to the bruise? A venous access device - sounds safe/not too scary? The variety I was going to have was a Portocath. Want to know what it actually is??

A Portocath is a little, round,....thing, about the size of a 5p coin or a dime. An incision is made in the skin on your upper chest/shoulder region and the port is put inside you - leading from the port is a tube which, also under your skin, is (somehow) attached into a vein in the neck. The incision is stitched up again. So you have, under your skin, a little round object. It is used by the nurses locating the port and putting a special needle through the skin into the centre of the port which seals around it and directs the fluid injected in into the tube which in turn goes into your vein and into you. Easy. 'People who have them, love them, it's so much easier and better.' Easy!?!? I almost had another panic attack just thinking about it. the thought of having some foreign object put in my body and left there was awful. I'm so squeemish it made my skin crawl but I didn't feel I had a choice. They were telling me this would be better so I believed them. And was immediately sent down to the surgical clinic to fix a date to have it put in: it's done under a general anaesthetic. So, off we go again, swept off to yet another unknown, shades of the two weeks before. Just when you think you're starting to get a handle on things they all change.
Dr Newby had suggested that they would put the portocath in in a couple of weeks and would do them next chemo treatment at the same time - all in one fell swoop. So, I thought I had a little time to get used to the idea. The surgeon had other ideas: this day was Wednesday - they'd do the surgery on Friday - that's Friday as in two days time. Oh, and you'll need to come in the night before. I was going to have surgery in two days (I'd never had an anaesthetic, never mind any surgery, before) and I was going to have to spend a night in the hospital on my own. Since the diagnosis I hadn't spent one hour on my own. PANIC STATIONS! It was, of course, one of the non-communicative surgeons and getting information out of him was like blood from a stone - not happening. So we went away with a strange picture he'd drawn of a circle, an information sheet (from Trisha) and a card to take up to one of the wards to arrange admission. I'm not sure it was lunchtime yet. Actually, it probably was: we'd waited a long time in the oncology clinic.

We trundled up to the admissions office for this particular ward to be met with distinct unenthusiasm. Mr Davidson kept trying to send his portocath patients up to this particular ward and I don't think they thought that was appropriate. She took my card and said they'd call me tomorrow to let me know when to come in.

I should have immediately taken a handful of Lorazepam as my anxiety levels hit the ceiling again. But I didn't and we went home.

Oh, we are so reaching one of the really fun parts of the experience now - but you'll have to wait!!
Next instalment: portocath surgery. See ya then!

Saturday, March 11, 2006

First Chemo Treatment

Are you sitting comfortably boys and girls?? Today we're going to hear the story of The First Chemo Treatment - isn't that fun?

Well, no, it wasn't really. 3rd March 2005. The previous day I had been to the Onc. Clinic to have my blood tests: they have to check your blood counts to make sure you're well enough to have the chemotherapy because the treatment lowers your white bloodcell count: which means you can't beat infections very well (as I experienced later!). The oncology clinic is a slightly scary place: an odd combination of being weighed and sitting in corridor after corridor while members of the Oncology team steam up and down these corridors between each others consulting rooms. And they're all women in heels - so it makes a fantastic clackety noise the whole time. And you sit there with magazines as old as the hills - I could never read the magazines, I could never read anything while I waited. I would feel so sick and anxious that I couldn't concentrate on anything. Eventually I used to do crochet while I waited because it didn't require too much engagement and it worked as a sort of soporific too. I used to have a little mantra in my head that said 'each stitch makes you more and more relaxed' and did kind of work.

So, you sit there in the corridor - which still has the remains of Christmas decorations (tinsel and such) stuck to the ceiling where it hasn't been completely taken down, staring at blank walls that need repainting and I would studiously try to avoid being aware of the other women around me. If I were unlucky there would be some discussing their treatment and comparing experiences. I hate that. I can't cope with it. I have trouble seperating myself from the experiences of others: I sort of assume that it'll happen to me. So hearing the experience of the woman who walks with a stick because the cancer has spread to her bones and she's having to have more chemotherapy which is painful - is not a good place for me. I admire her stoic-ness and her determination but equally I'm scared stiff that it will happen to me. And scared stiff that every time she looks worse. And scared stiff that one week I'll come and she won't be there any more. And in no part of my head is there room for the possibility that she won't be there because the treatment has worked and she's finished it.

No, the only space in my head is for a scenario where the cancer will have won.
And I can't seperate my cancer from her cancer. If it has happened to someone else then I can't see why it can't happen to me......
But a lot of this was later - the first pre-chemo day was the sort of scary where you don't know the drill, you don't know what's really happening. And you're surrounded by people and you feel trapped and really, I just wanted to curl up in a ball and hide under one of the chairs in the waiting area. I actually considered it. I really did. In an active, 'perhaps in a minute I'll just get up and crawl under that chair' kind of way: 'would anyone notice?'. But I didn't - I just sat there surrounded by my parents and by David and we waited for the great AJ to call my name.
When I had seen her the previous week she had run through all the side effects - of course - and had said that with the first set of drugs she was giving me there was a chance my hair wouldn't fall out and that they could try using the 'cold cap' to help it stay in. This means that before they give you the drugs and while they're giving you the drugs they put this helmet that's been frozen over your head to cool/freeze the hair folicles which is supposed to prevent the drugs from affecting them as much. I figured I'd give it a go but she said I'd need to have my hair cut short.
I should stop and say at this point that my hair was long and dark and straight - past my shoulders-long and short meant a couple of inches long max. So, I went and had it all cut off. It was funny because I'd never dared to have it cut short before - I'd had it bobbed, but never above my ears. I was too scared - of what, I have no idea any more. When you've had no hair at all the thought of short hair is nothing scary. Perspective is an amazing thing.
So, I went and bought hair magazines and picked out some pictures and went and had it cut. It looked fantastic.
It was so liberating to no longer be scared of it.
And then, that day at the clinic when Alison saw me for the first time since I'd had it cut, she said 'nice hair'. She noticed, she remembered, she was kind enough to comment. That meant so much.
And that day she went through the side effects again and we went away for another day. I'd been to see the chemo-suite the week before - and hated it. It was a small space divided into two with big windows with a fantastic view of the London skyline all down one side (It was on the seventh floor). You could see the dome, St. Pauls, the London Eye, the Houses of Parliament - just everything laid out before you. But inside the room was crammed with chairs - attempts at comfy chairs, padded but covered in that horrid plastic covering that means when you sit on them for any length of time your body gets all sweaty where it's in contact with the plastic. In the corner was crammed a desk and files for the admin person and everywhere were those drip stands -- I hate those drip stands. Just the sight of them makes me go hot and cold with anxiety. Being attached to them is awful - like being trapped. The room was full of people, seated round all sides of the room, there were curtains between the chairs but you couldn't have them drawn the whole time you were there - it made the room too claustrophobic. And so, everyone sat there trying not to look at each other, trying not to be there, attached to drip stands with bags of toxic chemicals in them (which would be delicately covered in a pink bag so you couldn't see the color of the solution - a little freaky. 'Pretty in pink'. A lame attempt to try and make it less scary but somehow it made it *more* scary.)
The walls were painted pink too, and the curtains were all floral - it made my skin crawl. It was such an attempt to make it 'pretty' and 'nice' but it couldn't detract from the fact that you'd just walked into a room full of seriously sick people.
Since I knew I'd be having chemotherapy everywhere I'd been in the hospital people (medical people) kept asking how my veins were and looking at my arms and which point they'd 'hmm' and 'haw' and generally make discouraging noises. This was not helpful - I started to feel quite concerned about the whole process.
So, First Chemo Thursday: I can't remember the start of this day; I can't remember getting to the hospital this day. I don't remember anything until I was in the chemo-suite. Thankfully a lot fewer people were there because it wasn't a Wednesday. I sat in a big chair that dwarfed me with a view out of the windows - but because the chair was quite low and I'm not so big when I sat in it all I could see was the sky. I think it was a pretty blue sky that day with a few clouds but I may be confusing it with all the other times I sat there.
Marta was the nurse that day - she started by trying to put in the cannula in the back of my left hand.
I don't have 'needle-phobia' but I'm not fond of having stuff stuck in me and what I really am a bit phobic of is having 'unnatural' objects left in me. Which is why I don't have my ears pierced and I can't write on the back of my hands (it makes me shudder when I see other people writing on the backs of their hands).
So I was doing the 'it's ok, it's ok, you can do this' mantra in my head and firmly staring out of the window at the sky while she did it. She made quite a palaver of inspecting all these various veins and tapping my arms and so on. Once she'd got it in she tried to flush it with saline and it was obvious that it wasn't in properly - she had put the needle right through the other side or something so out it came. At this point I was white-cold with panic - if I hadn't felt sick and faint I would have lunged for the door and not stopped running until.....until where, I don't know because of course, what I was running from was in me and I could never escape it by fleeing. And I think that knowledge was the only thing that meant I got through everything.
However, I did feel sick and faint and I didn't bolt from the room. I sat there with a fan on me, sipping water and eventually, she tried again in a different spot and succeeded. I was left with a purple and green and yellow bruise covering half the back of my hand for a month from where it failed.
So, there I was, hooked up to a scary drip stand with some sort of steroid that acted as an antiemetic with a bizarre helmet on my head that was so cold that my sinuses were twanging and they hadn't even started the chemotherapy yet. I'd taken my minidisc player with me, but of course I couldn't listen to it with this helmet on and I'd taken a favourite book but I couldn't concentrate to read it. Sitting and waiting and trying not to stare at other people. I'd become one of the crowd.
The treatment itself was a series of three injections into the cannula. This first round of drugs was a combination called AC (A= Adriamycin (doxorubicin) , C= Cyclophosphamide) The doxorubicin was particularly alarming since it's the color of cherryade. It's really quite alarming to see this red stuff snaking up the tube and into your body and all I could smell was the alcohol wipe she'd used on the connection between the cannula and the syringe. I can't smell that smell today without sick anxiety feelings. Other than that, the most bizarre thing was that I didn't feel anything at all.
She was injecting me with cytotoxic chemicals that, if they come in contact with your skin, can damage and disfigure you; with chemicals that were going to kill thousands of cells in my body - some cancerous, most not cancerous... and it didn't feel like anything at all. When she'd finished they gave me a plastic bag full of more antinausea, antiemetic medication to take away and instructions to call the suite or the 'cancer ward' if I had any problems and instructions to come back the following week for a blood test to see how badly my blood counts were going to react.
We went home.
We had dinner. Pasta with tomato sauce. I got part way through eating and couldn't eat any more. After having been so calm, so collected throughout it all I suddenly snapped. Crying, I declared that I would not do that again, not like that, I would not sit in that place, not with all those people, not being stabbed repeatedly to try and get the cannula in, not watching that stuff going into me. I would not do it like that again. They would have to do something. I could cope with some of those things but not all of them.
Do you know that, apparently, when children say 'I won't' what they mean is 'I can't' and when they say 'I can't' they mean 'I won't'. I believe this to be true (for a given amount of true) because I saw it in myself so many times last year. Above, I said 'I wouldn't do it' - I truely meant I could not. We thought maybe that they'd find somewhere else I could sit. That wasn't their solution - but we'll get to that later.
Not long after that I started to feel sick and *so* tired and I went to bed - it was about 7pm about half an hour after that I was throwing up. My dad and David sat on the floor with me in the bathroom - they couldn't really do much. I think that was the first time David had seen me ill - before all this I hadn't really been sick/ill. It must have been a bit frightening to see me so incapacitated. For my dad, of course, it was something he'd seen many times before - of course I was much smaller - a child. And he stroked my back while I threw up. This makes me cry so much - keening-kind of crying - the rocking back forth kind. The thought that my parents had to watch me go through this makes me so sad. Noone should have to watch their child be so ill. I can't imagine the helplessness. My mother said to me after the diagnosis day that she would do anything for it to be happening to her rather than me. That she'd had her life, that it wasn't fair that I had to do this. But at no point, not for a millionth of a second did I want that. I *never* thought 'I wish it were you not me'. NEVER. I almost think it would have been worse if it had been her. I don't do helpless very well and that would have been utter helplessness. How did I get to be the daughter of such amazing parents? My 'downness' on myself is such that I don't even think I deserve my family. They are too good for me.
Anyway, so much for 'I don't do sick' Jones. Think again, lady because I threw up the contents of my stomach many times over. And all your pills and all your potions couldn't stop that. For the next three days I felt nauseous - I did all my throwing up that first night. I also spent the next three days in a high state of anxiety - not *about* anything particular just twanging nerves, feeling like I was bouncing off the ceiling.
That was the end of the first day. There is so much more that happens, boys and girls, but you'll have to come back another day to hear about Dr Newby, the portocath and the febrile neutropenic sepsis.

Thursday, March 09, 2006


Ooh, where did I go??
Been busy, so I suppose that's a good thing. It was my birthday last Sunday: happy birthday me.
I had a bit of a 'do' on Saturday afternoon at a pub, with food and lots of old friends. It was an idea I'd had at the end of last year and it seemed like a good thing: to get all the people I really loved in a room together. Somehow as it got closer and closer to the event; it seemed less and less like something I wanted to do. I mean, it was nice to see people but it was also stressful. I felt like I had to prove I was really here and OK even if I didn't feel OK...
Then on Sunday I woke up at about 5am (very unusual for me) and I felt as sick and as anxious as I had done a year before except this time it wasn't due to chemotherapy drugs and steroids.
I haven't told the story of the first chemotherapy treatment yet, have I.... I will, it needs a bit more time than I have now though.
As long as I don't go around thinking I'm supposed to feel OK then I guess I'm sort of OK. Oh, I don't know: it doesn't make sense. Not even Elaine could follow what I was trying to say on Monday. As I sat in the gloom of dusk trying to explain something that I can't even remember now....
I haven't cried since Sunday: that must be something of a record for I might even get through a week (well, a work-week: small goals, right?)
Bed, bed, bed. So tired. Want to feel better and happier. :(

Friday, March 03, 2006

The weight

My hands are heavy.
My stomach is heavy.
I feel like I might stop breathing at any moment: just because it takes so much energy.
Sadness is heavy.

50 things that make me happy

50 is hard - 50 is a lot. So here are 10 more:

11) Purring pussycats on my lap (as opposed to the one who clobbers my ankles from under the chair as I pass: Maxwell!)
12) Smell of mown grass and jasmine
13) Finishing a knitting/crochet project successfully
14) Shopping for a new knitting/crochet project - I love handling all the yarns, feeling the textures and comparing the colors
15) Clean, high thread count percale sheets
16) Orange chocolate
17) Dinner at the Lemongrass (Cambodian, yum)
18) The robin who flies through the window in and out of our office (except when he craps on my desk)
19) Real letters in the mail - someone who has made the effort to put a real pen to real paper and stick on a stamp is special
20) Surprise presents, for no reason, because you saw something that you thought I'd like

Are they getting more bizarre/surreal? Just another 30 to go......
Is this as hard as I'm making out? What's your list of 50? I promise not to crib - unless it's really good! (And maybe I'll try out some I haven't done before.....)

Thursday, March 02, 2006

Don't waste your days

I couldn't get up this morning: the sun was shining, the sky was blue and thought of missing it was so horrible that I couldn't get up.
Making no sense? It does really.
I knew that when I got up I would have to go to work and the thought of being stuck in an office, away from the day, from the real world just made me so miserable. Like, what was the point of going through everything I did if I don't get to be in the world? I came through this because the 'self' has a strong desire to live. It is frightening now because I still have a strong desire to live. Stronger.
A desire to really be in the world and to really, truely see it. The sky, the sun, the birds. The elemental earth. The basic earth. That was there before us and will be there after us.

"only connect"
(in the words of E.M. Forster)
I need to 'connect' but I feel utterly unconnected. Like I am at right angles to the rest of the world, running at a tangent, a jigsaw piece askew in its place. I don't fit. What I want doesn't fit. Assuming I know what I want, "which I don't, so then which do you pick? Where you're safe out of sight, and yourself but where everything's wrong? Or where everything's right but you know that you'll never belong?" (Thank you, Stephen Sondheim)
I no longer know my own mind, I no longer trust myself to know what I want. How can I trust myself? I've spoken before about being 'broken' - and that is an issue. How can I trust myself when I have proved to be so untrustworthy? I have high demands of myself and I expect a great deal: from myself and it's destroying me.

What do I want?
I don't know.
I want to know what I want.
I want to do good, I want to do something worthwhile, to help people.
I want to stop being scared - of everything. Of other people, of what people think of me, of failing, of not being liked. I am still that child being squashed by the unkindness of others.
I want to find my 'place'.
I want to be strong.
I want to be well.
I don't want to cry all the time, over everything.

Note to self: Life is hard: grow up, stop wingeing. Get a grip. There are people out there who have and have had it worse then me. So, I'm scarred - that is all part of the story-of-me. It shows off my strength. It proves that I'm a winner. Because I refused to be a 'victim of cancer', or even a 'survivor of cancer' - I'm a winner. For now. And there is the crux of the matter. It is impossible to know what for certain the future holds: more cancer or not more cancer and that is why I need to make each moment count. I don't know how many 'moments' I get. I can't waste time sitting in offices when the sun is shining outside.

This post is abysmally written - a 'stream of consciousness, without the consciousness'. Pah - sorry if you've got this far. It probably makes no sense, and is utter rambling.

A year ago tomorrow was my first chemotherapy treatment. A year ago today was my first chemotherapy clinic appointment. Blood tests. Scary explanations of what the drugs would do to me and the instruction to return the following day to the chemo-suite (a horrible place - all pink and floral and full of scary people with cancer staring at each other.) I'll tell that story after the weekend I suspect. We'll see.

Wednesday, March 01, 2006

I feel sick, I feel sick, I feel sick: not anymore, I don't

I began this morning with an 'I feel sick' mantra because it was checkup-day with the surgical team and they always seem to manage to make me feel a) stupid and b) scared-out-of-my-wits.

Then Keith made me feel a bit better with my massage: my shoulder is still crummy. I'm off-balance now that I'm one breast lighter on my right side.....and this apparently means my shoulder is rising on that side and, I don't know.....I'm just wonky - alright? I am being fitted for a new prosthesis on Friday though - maybe that will help and I may have to call Karen-the-physio (please don't hurt me, Karen!) if it doesn't get any better.

ANYWAY, after show-and-tell of my scar by the surgeon to the SHO and poking around the remaining breast and the portocath the decree was that all was FINE. Apparently my scar is at the 'lumpy stage' - delightful! [It is *not* lumpy - it's just red and obviously scar tissue. Don't insult my scar, mate!] He was not at all interested in my shoulder or in any of the phantom pains across my chest. No lumps=fine. OK. I guess you're just not supposed to winge to surgeons about pain: you should be far too busy being grateful for being alive.


Bravo, you, for removing my breast; excuse me if I'm not more delighted at my wonkiness. It's very wearing to be constantly grateful and I can't help feeling a little bit like, if I'm not grateful enough then the cancer will come back to punish me. Now, I KNOW it doesn't work like that (I hope) but try telling that to the emotional bit of oneself. It doesn't get it.

I keep trying to remind myself to come up with something each day to 'celebrate' being here but it's really hard not to get sunk in the morass of 'crap, it's all crap, I'm crap, crap: it truely is everywhere' and sometimes I sit there and have to think: 'what good thing am I going to do today, what positive thought am I going to have to mark being here?' and I can't come up with an effing thing....
And that's why I can't get to work on time - because I'm too busy trying to think of a 'good thing'.

So then my dad (who went with me) dumped me it by saying not very sotto-voce 'are you going to tell them about being sad?'.

'Thank you, dad'

I know, that's what parents are for. But I didn't see the point because the response was exactly what I expected it would be: 'It's normal to feel like this after everything you've been through, the endocrine medications won't be helping, it will improve in time, we can refer you to some psych person if necessary'. I know all that and it doesn't make me feel better. All the knowledge in the world can't change the way you feel because feelings are not intellectual - they're primitive survival reactions. My philosophy is that all the things I have been through are real and true and so are the feelings they've engengered - so, it seems to me, you can't just try and brush them away, magic them away, medicate them away. They are real and true and need to be respected and given space and time at least equal to the physical reality that bore them.

So I will continue to be sad and/or miserable and weep and wail and cry when appropriate (or not appropriate) and one day, I'll be done. And til then, Elaine, you'll have to put up with me!

[I still don't have cancer: this is good - I feel like I'm waiting for it. And every time I go to one of these checkups, I'm convinced that it's come back and am actually surprised when I'm told that I'm fine. 'Are you sure? How sure are you? How do you know?']