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  • Post 20011115

    15/11/01, 10:31

    Well, the catheter has come out again – I was actually “bypassing” yesterday (urine was coming out around the catheter when I went to the loo) which bodes well.

    At the moment I’m still smarting rather from the removal of the catheter….but I hope that I’ll be able to go in a bit…..


    15/11/01, 11:16

    I suddenly have the fear…..I feel like I’ve been overwhelmed by things which – until now I’ve been holding back.


    11:50

    Well, there was a break for doing a visualisation during which I struggled to control my brain, which seemed to be running out of control – topic hopping so quickly that I had no chance to get to grips with anything before I found I was leaping from one topic to another.

    It was terrifying to feel so utterly out of control of my own mind. I just couldn’t stop it. It wasn’t even like it was all bad things – but I just felt confused – almost dazed with the millions of thoughts running through my head.

    It has stopped now, as quickly as it started……

    On the rather less stressful side – I managed to urinate – which was somewhat of a load off my mind…..or perhaps off my bladder…..

    I also restarted hormones today – which I’m hoping, like last time, will reduce the unpleasant clicks that have been eminating from my joints. It might also help with my mental state!

    Oh, yes, and I just realised that there’s more than 50 of these sodding diary entries to put up…..I’m beginning to feel that maybe Rachel was right – and that I do need to do something about making it easier to put up entries….



    Kate E

  • Post 20011114

    14/11/01, 04:15

    The problem is I get tense, or more, a muscle I don’t yet have control over gets tense, which makes me tense, which at some subconcious level makes the muscle more tense, which mhkes it ache more, which makes me more tense…….

    All this means that I’ve just taken some coproximol – which will hopefully kill the pain, thus stopping the loop. I hope.


    14/11/01, 20:17

    Well, the catheter comes out tomorrow, and, I’m sore – the catheter has been driving me nuts all day. Really, really incredibly annoying. It’s driving me up the wall!

    If it had come out this morning that’d’ve been fine, but no. It comes ont
    tomorrow – and it must be said – I’m tense as hell about it…..

    The other thing that’s bugging me is this bizarre sensation – before the op,
    on the rare occasions that I got an erection (not that I ever managed to get one
    which would have been of use to anyone….), there was a certain amount of
    discomfort – like muscle fatigue like pain. And I keep getting that at the
    moment. I’ve not had it for most of the day but for much of last night the pain
    was there – and coproximol didn’t touch it at all.

    I don’t know what was causing it – or if it’s normal – but it was sodding painful last night.



    Kate E

  • Post 20011113

    13/11/01, 11:49

    Well, I’m feeling sore, and a bit achey – and I’ve just thought that I could really do with something to drink. Mostly I’m mildly worried about the mice….there are mice in the house which perturbs me. My mum is terrified of them, I’m just worried about their infectious qualities…..

    Hrm…..


    13/11/01, 14:26

    I’m so tired at tne moment – everything just wears me out so quickly…..


    13/11/01, 16:10

    Sheesh, I’m so tired! I know that this is at least partially my own fault because I allowed myself a sleep on the sofa – but still!

    I was once told that bookcases were a good way to judge someone’s character. So what does this tell you….?

    A Practical Introduction to Surface Mount Components…..sat next to The Children’s Book of Books 1999…..Fatherland sat next to Elephants Don’t Sit on Cars…..Elementary Mathematical Analysis on the same shelves cs Asimov, Ben Elton and Stephen Fry…..

    If I found these books in someone elses shelves I’d be intrigued – they seem to me to be an odd collection of books. What does it say about their owner? Someone with a multifaceted personality? or someone who’s simply out of their tree? I don’t know. I do know that you couldn’t tell which of the technical books I’ve read – not just from that selection but from all my many books because all the information has long gone from my head.

    It is one thing that I hugely regret – that I never made more of my mind. And now, now it seems incredibly hard to learn. Or at least to learn and have the information stay there. I don’t know if it’s just that I’m out of practice – or if I really can’t learn anymore – at least not the way I could once.

    I wonder if this coffee is going to cure my tiredness.

    I tried to fool myself into believing that I’d use my time off to do something of value – rewrite this website (to use jsp for these diary pages), do something else worthwhile…..is it going to happen? No.

    Why? Simply because my obssesive phase of computing is over again – and my mind is switching to something else – photography I think. If you look at my life, all of it, you’ll see a disturbing pattern (well, I find it rather disturbing…) of “hobbies” which grow and grow and grow to consume all my time and then, usually fairly dramatically fade into nothingness – I end up barely touching whatever it was that mere days before was occupying vast swathes of my time.

    I usually return to whatever it was sometime later, and usually without realising that I’ve done it. Computing, photography, cars (and probably now bikes), books, and (although not for a long time) electronics. All of these have been “hobbies”.

    I don’t know why this is – I don’t know if, apart from my habit of the most expensive period of interest being just before I suddenly and completely lose interest, there’s anything bad about this – apart from the fact it drives me nuts. Why? Because to some extent I don’t actually lose interest in whatever the subject is – I just find that I can’t find any enthusiasm for it (it’s hard to explain…) – and so, if I start to do something related to it then I quickly run out of energy and stop…..

    I suppose it’s just another aspect of me I don’t quite understand. Like the whole CD’s in alphabetical order, with the CD the right way around in the case. It’s obviously not normal to spend upwards of 5 minutes trying to decide which way round a cd with complex artwork on it should go. I have the same problem with DVDs although in general they have the title printed on them a specific way up…..and oddly it only matters for my ownDVDs.

    But what does this all mean? Do I have obsesive compulsive tendencies? Almost certainly…..is it a problem for me? no – I don’t think so – but it does worry me.

    As does my continued inability to express my emotions as I’d like to. I don’t know how to – and sometimes I don’t know how to even know what feel. Sometimes it’s hard for me to unlock my emotions – they hide deep down within me, refusing to let me see or understand how or why I’m feeling the way I am.

    *sigh* – I guess the thing to remember is that I wasn’t expecting the op to cure any ills, except my body related ones (and it has definately done an enormous amount in that respect) – so I’m almost of much of a screw up as I was 13 days ago!

    On the body issue……it’s made an astounding difference. Before the op,
    no-one (and I do mean no-one) saw me naked (except once, and that was by
    accident as I scuttled from my room to the bathroom). I just couldn’t bear to
    let anyone see the horrible, deformed mess that was my body (yes, I know that it
    wasn’t actually deformed – but it felt that way). I was so ashamed of it. Now –
    that has gone. I actually quite like my body now – I have some real
    enthusiasm for getting fit, for reducing the size of my stomach, for eating
    healthily, etc. Letting people see me naked – not an issue anymore. For the
    first time in years my mum’s seen me nude, the nurses and care assistants in
    hospital – I had no problem with. I can remember what I was like the first time
    I went in to see Mike Royle – so shy, I just didn’t want him to see me….now I’m just so relaxed. It’s wonderful – after so long….

    Anyway – I need another bath…..


    13/11/01, 20:45

    Gack, my knees just went crack….again…..


    13/11/01, 22:30

    On the back of (my 1979 edition of) “The World According to Garp” it includes ‘Women’s Wear Daily’ in the list of people & magazines that reviewed the book favourably. Is this a joke? Is it a oddly named serious literary magazine? Have I missed something important about American culture?

    I finally managed to place what was familiar about the smell of Witch Hazel. It’s what the school “nurse” would put on cuts and grazes in my primary/junior school….’s funny how these smells invoke memories….

    Anyway – a bit of good news about my dad….it seems that the chemotherapy guy is more hopeful of the chemo helping – he reckoned on a 50/50 chance of it helping. Which is the best odds we’ve got. It seems my dad’s case is of interest because despite extremely severe cancer he’s still fairly symptomless…..although oddly my mum has all the symptoms of cancer, and indeed has had them since roughly when the cancer is thought to have appeared.

    Anyway – that’s some good news. I’m now going to go to sleep!

    P.S. – Amy – please tell me about the whole pizza thing…..and the bed thing! *grin*.



    Kate E

  • Post 20011112

    12/11/01, 09:12

    I’m so scared of losing my dad. I know I need to be positive, but it’s so hard knowing what I do. I love my dad so very much and losing him just after I finally let both my parents back in….

    I keep telling myself he’s not going to die – but the cancer is so bad. I always thought I had years left. I couldn’t imagine a world without them, and now I’m having to. It feels very selfish to say about me when it’s him that’s ill.

    But I know I’m not just thinking about me.


    12/11/01, 19:24

    Well, today seemed to be going quite well until a little while ago when it became apparent that the infection which caused me to have to come home with a catheter has decided to have another go at me.

    I’ve actually been quite up and about today – but this has actually forced me to take some painkillers (coproximol) – which are making me very woozy – and my GP has prescribed some Trimethoprim – to try and kill the infection….we just caught him at the surgery…..

    So I’m drinking gallons of water and trying to relax because ot the moment my entire body is tense……



    Kate E

  • Post 20011111

    11/11/01, 19:49

    Well, my energy appears to be returning from wherever it’s been hiding – albeit a little at a time. I’ve actually been at least a bit active today and I don’t feel absolutely shattered! That said my current definiton of active is somewhat less energy consuming than it was pre-op, and I did spend a good proportion of the morning asleep…..

    But – I did go and help my dad move the mog about a bit – in preparation for it being taken away for restoration….which entertained me for a good hour or so.

    And I went for a wander around the garden….the problem with winter is that if you’re in the wrong mood you get this terrible death and despair feeling – which with the stuff about my dad – well, it’s not good for my state of mind. But anyway…..

    So, this evening I finally went through and did my e-mails – and found that – I guess unsuprisingly – the RSI is still there. I could just feel it when I stopped….. *sigh*. I’m not entirely sure what to do with my life – I’d always kinda presumed, well, for a long time I’d presumed that it’d be computer related – but not being able to type….well, that’s kinda screwed that up. I’m not really sure what else I can do, and that scares me slightly. I get the feeling that the shop idea is off. I don’t really know if I should bring up the subject atm….ah well, I guess I’m back to the old “Go with the flow” advice :-)

    Oh, and…..I’ve got more elastica winging it’s way to me…..the sessions album….*grin*


    11/11/01, 22:06

    Between them, Betadine and Kotex must be having a field day! Betadine gel, Betadine pessaries, Betadine douche…..and more Kotex than you can imagine. Incidentally, the Betadine pessary’s applicator is frigging hopeless….

    And I’ve got another 7 weeks of this! Well, 5 weeks of this plus a couple of weeks of this plus work (but by then I should actually be moderately healthy again (although it implies that healing takes about 4 months)…..

    When I can actually decide when I want to go to the loo, that’ll be a good day……

    Hrm, it’s lonely in this bed…..missing human touch….. :-(



    Kate E

  • Post 20011108

    08/11/01, 09:18

    Well, the catheter is out. I’m just waiting for a while before hopping out of bed – feeling a bit sore y’see…..Listening to elastica to kill time!


    08/11/01, 13:25

    Oh god. For once I thought something was going right. But no. I’m unable to urinate. It’s fucking agonising when I try. Anyone want to watch it turn to shit?

    [crying]


    08/11/01, 15:07

    Why? Why does the world always do this to me? Raise my hopes then dash them? I thought that this one thing would go smoothly. This one thing I wanted would go right. But no. It seems I can’t even have this.

    The nurse said “You’re not too swollen” but it appears she was wrong. I’m too swollen to pass any urine and after an agonising couple of hours they decided there was nothing for it but to put the catheter back in. So. Here I lie with a bunch of pain killers in me and a fresh catheter which I’ll have to go home with – meaning another week of lousy sleep and pain and discomfort and more hating of being me.

    They said “It’s horrible, but it’s about a 50/50 split of those who need one to those who don’t”. But I only know one other TS who’s needed one.

    I’d been looking forward to this so much – to being free – if sore – and having a good start to this chunk of my life. As usual it’s been taken away from me.


    08/11/01, 15:53

    [crying]

    God it’s depressing. After a morning without the catheter to have it back. It feels like a huge step back. It hurts. I hurt. The catheter hurts. I hate being me. I hate everything always being fucked up at the last minute. What did I do to deserve being me.

    Will it ever stop – will things ever go right? Or will I always have this happen?

    [crying]


    08/11/01, 16:12

    I don’t know what the painkillers were, but they’ve not touched the pain.


    08/11/01, 16:58.

    Oh goddess, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore, it’s sore.

    I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt, I hurt.

    The painkillers have done nothing. I have a burning sensation in my ureter. I hurt, I hurt. Oh goddess I hurt.


    08/11/01, 23:03.

    Well – a big thanks and an improbably large number of hugs to kira, Rachel and Lauren for helping me today. I felt so alone and lonely earlier but they’ve managed to make me feel only utterly miserable instead of totally depressed.

    Today I’ve had codidramol and voltarol, neither of which seemed to do anything. I’ve just been given tamodol (I think) which I’m hoping will at least allow me to get one nights rest….



    Kate E

  • Post 20011107

    07/11/01, 07:24

    Well, I’ve managed to plan my evenings viewing so that I should have something to watch while dilating…which is important, because it is incredibly dull…just sat there holding a lump of perspex inside you…

    Interestingly the dilators are made to “Charring Cross pattern”. Ironic that since the NHS told me where I could stick any chance of treatment ;-/

    Anyway, so, there’s bugger all on tv until 5o’clock, which is annoying but I guess I’ve still got my magazines……..well a few of them. Oooh, I think breakfast night be here soon.

    For some reason I’m incredibly tired this morning….I don’t think I slept very well. It’s possible, I suppose, that I should have some painkillers before going to bed – but I don’t like taking them because my pain level is low; it’s just rather nagging. At the moment it feels like I have muscle fatigue from a constantly tense muscle.

    Incidentally a thought about having the pack removed. For me it felt like someone pulling a plaster off my insides….

    Mmm, so, yes…

    Definately not something I’ve got any desire to repeat! What else? Oh aye, hopefully the catheter comes out today which is something to look forward to – sort of….


    07/11/01, 11:45

    I cried today for myself. I cried for all the pain, I cried for all the wasted time and the lies. I cried because I never asked to be TS.

    I cried because it was and is unfair that I had to put my body through this just so I can live in it. But at least I think it’s nearly done and I can get on with my life.

    Which is why I was also crying with a sort of happiness. I hope I have the ability to move on.


    07/11/01, 13:07

    Oh my god! I just saw a kids tv program – a la postman pat…with a whole sequence about a mobile phone…it’s not right!


    07/11/01, 22:40

    [Suzanne Vega – Solitude Standing]

    I feel oddly quiet this evening – although the friends I’ve been rambling at (Cheers Jenny & Lauren :-) tonight might disagree – contemplative. I suppose that after so long knowing what I wanted – to finally have it is bound to leave me feeling quite odd.

    I feel like I finally have my own body (there seems to be a storm going on outside btw). Never before has this body felt like mine. It’s always felt alien, not right at some fundamental level and that feeling has just disappeared. It’s gone completely! (Although I’ll grant that there are bits of me I can’t actually feel atm – hopefully I’ll get some sensation there eventually).

    I’m also rather nervously awaiting the removal of the catheter – hoping that that all goes to plan…..I’m still terrified that something is going to go horribly wrong – and hoping that it won’t.



    Kate E

  • Post 20011106

    06/11/01, 05:22

    Well, the diarhoea continues unabated. Indeed, since I’ve actually eaten there’s more of it….so that’s sod all sleep for me and my muscles are completely fatigued from holding my arse up in the air. Still – as the nurse said – it’ll be better tomorrow.


    06/11/01, 15:21

    Well, it’s been all go today! Although last night was less than fun – food + diarhoea is not a combination that leads to a good nights rest.

    Anyway, so Mr Royle popped by and removed the pack this morning – that was a whole bundle of no fun. The actual removal of the pack wasn’t too much of a problem – it was uncomfortable, but definately bearable with the Entenox…it was cutting the stitches which hurt like hell – so much so that the nurses heard my scream (there was only one) and Mike actually had a go at me!

    “Oh come on, I’ve not done anything yet.”

    Despite a strong desire to shout at him a lot I resisted. Anyway – once that was over and done with we moved onto not being in bed anymore….so I managed to get out of bed and over into the chair with a small amount of assistance….having sat there for a while I did try for the loo….the journey there was okay but I ended up rather woozy and had a bit of a lie down.

    Anyway – had me bath which was Lovely! Then had a look in the mirror which was inexplicably wonderful. It was like seeing my body for the first time…..wow…..

    Anyway – tomorrow is catheter out day which should be fantastic.



    Kate E

  • Post 20011105

    05/11/01, 11:32

    ARGH! I’M HUNGRY!

    HUNGRY, HUNGRY, HUNGRY. I want to go to Pizza Express, or the Mexican place up the road, or the burger shop (oh god I want a kebab sooo much), anything! Even a McDonalds would do right now. Just some fooooooood! Gaaaaargh.


    05/11/01, 20:48

    Foooood!

    Well, okay, that was earlier, but hey, I was busy eating!



    Kate E

  • Post 20011103

    03/11/01, 06:58

    Hrm, it appears there’s been some “leakage” during the night so a new bandage is in order. I’ve also been rather overheated as well which has made me feel rather icky.

    And finally in my catalogue of misery I’ve got awful wind….mind you that’s put me off eating which is handy.

    I still appear to have roughly the concentration span of a goldfish however – which is rather annoying. And the drains are irritating me….still, they’re coming out today.


    03/11/01, 07:55

    Gah, today is already dragging..

    It’s odd getting sensations from things you know aren’t where they once were and feeling that you know roughly where they are but not really knowing.

    I’m alternately being driven nuts by wind, the catheter & the pack atm. The drains being constant background irritation….


    03/11/01, 09:57

    Sometimes the world is wonderful….[Monty Python – Penis song]


    03/11/01, 11:59

    Oh jesus….had the drains out….that’s got to be the weirdest and certainly the least pleasant experience of my life so far.

    Imagine if you will a snake under your skin. Now imagine someone pulling it out. Slightly dragging, distinctly painful…I might have been slightly high on Entenox (or however it’s spelt) but it’s still painful. I did manage to resist letting loose with a stream of swear words but only just!



    Kate E