How long is a piece of string? As long as a shifting goalpost...

12 minute read time.

Well, I thought I ought to do a blog to update things as last we left it; I was waiting to do a fart, or poo or some such in hospital. That was 4 weeks ago, and I have been known to write 4 pages on an afternoon’s worth of stuff so, settle down with a drink and cake or just skip to the end and say ooh ahh mmm x. especially if you read warped etc, you’ll know most of this already, but I wanted to record it for me over here really.

I dutifully farted and after pacing the ward and eating an obscene amount of grapes and drinking a ridiculous amount of water, I finally did the ‘news’ the consultant was waiting for and the presentation of a poo  allowed me to go home on my Boot Camp early release programme…

Oh if only I could get my own way more often by doing a poo….. sigh.

 GC had said I am not sure it will work and his sidekick FC had said the same, along with the funny (not) phrase of ‘use it or lose it’ but SC (surgeon consultant) thought it was worth a go and he would do a bit of bum ballooning whilst I was out for the count (Oh thank you for small mercies) and leave me with a hole to heal up and said ‘I will be interested to see what happens’ (as in whether you shit yourself or not kind of interested… bloody weirdo, can’t he have normal interests like football or fishing or something?)

GC says oooh you are doing well with your energy etc the week before the op, we are going to set you back a couple of weeks now of course…

A couple of weeks? Ooh that’s ok….

 SC says  6 weeks to heal, you should be fine to go back to work after 5 (end of Easter holidays)

Bit of a goalpost move of 2 weeks but ok, that’s the holidays, ok…

I was sent home with Boot camp leaflets saying 2-4 weeks back to work, swimming, jogging etc. I ignore the fact that they are generic surgery leaflets and for those with stitches etc…  plus another one that says wait 6 weeks before lifting anything.

Ooh 2-4 weeks great! I’ve got a week in hand thinks LM Might get some swims in before school starts.

Lovely Mandy the bum nurse (she has a special title but I can’t remember what it is, but she’s been my support nurse all along) says take it easy and no doing anything ok and no lifting etc etc blah blah blah… la la laaaah

What? Oh yeah, Mandy… I’ll be good, a couple of weeks will be nice doing nothing.

That first week was a case of ouch ouch and owwwww.  District nurses coming round every day to pack the hole with ribbon stuff and boredom.

Second week, more of the same, a bit less ouchy and more boredom.

Third week the same less ouchy more boredomy.

I get the nurse who came the second day and she says ‘Oh you have not healed at all yet.

 What???? 3 weeks in, I should be done by now!!!

Looks good though, don’t worry. Take it easy. Oh I’m going to go to the surgery next week for my dressing changes says LM, get me out of the house etc. Ooooh don’t overdo it she says. We can come round if you are tired.

 But I need to get going cos I am off to work the week afterwards says LM.

Nurse falls on the floor, picks herself up and says you are in this for the long haul… you are going nowhere while it is healing and it hasn’t even started yet. Rest and do nothing. Get a fit note.

Hey! Who moved the goalposts?? Hmmm maybe this is going to be bigger than I thought….

I see the nurse at the surgery who can sort out fit notes for the GP. I like her, she’s funny and kind of ‘gets’ me. I ask her about fit notes and back to work and she starts laughing and says No way!!!!

Roughly how long are we talking says LM?

How long is a piece of string… says Nurse.

Could take months, but once it starts to heal it does so pretty quick. I tell her I joined a gym to get fit for the op and before I’ve finished the sentence she is crying with laughter and saying Oh we are going to have to watch you!

She writes on my notes something about me being mad enough to want to go back to work and no way am I going anywhere with an open wound.

Months??? But but but…. who moved the goalposts? Noone ever said months!!

I am getting married and taking my class to Sweden and I have lessons that I have put off till now while phasing in and if I don’t do them now, then…..

and am I meant to nip out in the middle of my wedding to go and get my dressing changed? Can you imagine it? Me sat in my dress in the surgery waiting for my turn and then back out the reception? Haha.

So, I throw a wobbly in the Room, get cross that everyone tells me to be patient cos I know I have to be patient, that’s not the point  and then eventually calm down cos I always do in the end and start to get my head round things and reconcile myself to losing part of my job (I am head of 2 depts and have not really run either all year due to phasing back in and now this op etc and only so long they will pay me to not do a job when they are making cut backs here there and everywhere’) and I start to get my head round it and I can wait a while for a swim etc.

Then a few days later, the nice nurse says Oh that’s started healing now…. Should heal in about 10 days or  couple of weeks.

Hoorah! says LM, and promptly forgets everything she has just reconciled and calculates, that’s only a week off at the most from the start of term and back to trips and weddings etc…

Nice nurse plays with my stitch showing me if she pulls it, she can close the hole (purse string type one running round the edge of the circle) Don’t let the other nurses cut it she says, as it’s still attached. Weird but interesting.

I get to leave it a couple of days as it’s so delicate the new growth, she doesn’t want to disturb it. Of course when it comes to the next dressing change, it’s a bit crusty and scabby and scary nurse pulls the stitch out with the crusty bits.

 Oh there’s the stitch says LM

Oh? Is it? She says peering at it…. Ooooh, Hmmmmm. Ahhh Hmmmm. Says scary nurse.

(She jokes with you about crap she is and that she has no confidence in her dressings etc. She locks the door when you are in there and she has to look at stuff really really close with a light and it makes me giggle or terrified, sometimes both)

After lots of umming and ahhing and worrying from her, she packs me and slaps a dressing on and says here’s a spare dressing in case that one falls off and I’ll consult my colleagues about the stitch and we’ll see what to do on Monday…. Oh and I am not even going to talk to you about work or doing anything for a fortnight. I see on your notes it says you are mad enough to think you can do stuff…

Hoorah, fortnight is ok. I can do a fortnight and maybe I’ll be better before then….

So, after a weekend of utter utter boredom beyond belief…. (I have SO much I could do, I don’t really get bored normally, but all the things I am desperate to do I can’t… the garden, decorating the house, crafts, etc etc all involve moving and lifting etc and driving to places to get stuff etc) You see I am starting to feel ok, except for the hole in the belly. I feel well actually. I was just starting to feel well before the op and was enjoying going swimming again and doing things, just normal things but things all the same and at the moment, I can sit or lie down and play on the computer and read and can’t drive. I can just walk into town if I have a rest before I come back. That’s about it. Boring!

I go back today. Fearful of being locked in a room with scary nurse staring at my belly at point blank range with the interrogation lamp on and maybe needing that stitch redoing…

Slight interlude here… GC and FC have both hesitated about examining me and suggested doing it under anaesthetic so as not to hurt me. Oh get on with it says LM and ignore the screams. I don’t seem to react to local anaesthetics so have winced and howled through various things, picc lines put in etc and wounds packed with no pain relief etc and I am ok. I am a ‘tough girl’ and can do pain etc but The mere mention of stitches, never mind one that runs under your skin in a circle round a hole and I am a terrified wussy baby!!!!)

Ok, have a breather and a cup of tea or a slug of brandy… are you sitting comfortably? I’ll continue…

There is only me and a man in the waiting room for the nurse. He is sat with his eyes shut. He suddenly opens them and starts singing. I jump out of my skin! Then he gets louder and he’s really crap and out of tune and I can’t even make out the song, but it’s very embarrassing and slightly scary.

So she pokes around and says I might need to get a colleague…

What for??? So you can doubly poke at me?? Two pronged attack? One from each side??

And she pokes and prods and says she thinks its ok as it is and it’s looking good etc and packs it up and slaps another dressing on.

Phew, no stitches!! No double sided attacks!!

How’s the pain? She asks… Oh much better says me breathing again. If I don’t move, I can’t feel it now most of the time. It only really hurts when I move.

Well, you know what to do then don’t you…? She says

All together now…

Don’t move.

Very droll. Says LM.

Can we talk work and how long realistically says LM cos they are starting back on Wednesday and I’d like to let them know. She scowls at me.

A week? Couple of weeks? I hesitate?

Let’s just say you would be lucky to go back before another month. You need to heal up.

Eeeeeek! You moved the goal posts again….

She laughs and said ‘most people would be delighted to get another month off work’ Well, can you find one of them and swap places with me please says LM….

So I am fed up with the goal posts moving. I know you all say rest and recuperate and all that and yes, I know it all, but it’s the’ this and then that and then this again’ that does my head in. If they had said 3 months or whatever, I would have got my head round it and been ok about it. This is taking longer than my treatment at this rate  and it was an elective operation and had I known it would take months to recover from it I might have thought twice about it.

But, looking on the bright side, I have a bum back. It hurts and bleeds and leaks a bit, but its my bum and its working better than we thought it would so far and my poos are endlessly fascinating at the moment (which is a good job, cos there are lots of them!) and… lots of friends are taking me out for coffee and if I lose some of my job, then so be it….. the only bit I am really  fed up about is that I am the only one who can teach my subject and I do a once a year block with the younger class. Some of them have been asking me all year when am I going to do chemistry with them… and it’s that block I am going to miss and they have been looking forward to it for over a year now and I feel crap for letting them down and them not getting it. Oh sorry, that wasn’t bright side.. back to positive….

Oh, on the way home, I was a bit harumphy so I looked in the gallery. They had some beautiful jewellery in there and I think I have found my wedding ring. :) (well, the design to get one made)

It is oxidised silver with little blobs of gold on it. The silver is grey like lead but shiny and she said that it wears off over time and becomes shiny silver so you have to get it re-oxidised. I rather love the idea of having a dull ring that becomes shiny over time. Normally things tarnish and dull with age and I like that symbolism of something becoming more shining with age rather than dull. We have been together 21 years and it took cancer to make us shine again so I think I have found the design.

Oh, and I know I said I wanted to live long enough to see grey hairs, but finding a grey hair this morning is cheating!!!!

Enough prattling on. I am ok, I am healing slower than I wanted but I am healing and that is good. No point in fussing about futures cos let’s face it, I have a bone scan beginning of May, a CT on my lungs and liver and an MRI on my pelvis end of May and then check up with GC 9th June, so who knows…. This going back to work and trips and holidays might be academic anyway…. Of course I am hoping/assuming for good news in June, but there are no guarantees as we all know.

 So I bought some seeds on my way home and will sprinkle them in the garden and watch them grow.

Bernard St Bernard has an extra big barrel of Brandy to revive you. Look out for him stomping up and down.

Little My x

 

 

 

Anonymous
  • FormerMember
    FormerMember
    Hello Little My I feel like I know you so well! I'm one of those people lurking in the back reading all your group messages and who you have helped kick out of the pits of feeling sorry for myself and what was happening to me over the last 21 months of cancer hell. After 7 months of going to the GP and getting no where they finally sent me to the hospital for tests. I was diagnosed with endometrial cancer and secondary rectal cancer on 7 March 2011 but then when the local hospital forwarded my case to Guys and St Thomas they reviewed and said it was only rectal cancer. Had Radiotheropy and chemo tablets, then surgery 6 months later, hysterectomy, rectal and a bit of colon taken out and ended up with a colostomy. Late Sept 2011 doc told me that they got it wrong it was primary endometrial cancer and secondary rectal cancer that had spread all through the pelvic area and it was advanced stage 4 cancer. So I've had a further 6 months of chemo and now waiting for tests to reassess the next treatment if any. After many night not being able to sleep and worrying I found your thread about your Baggie stories and poems. What a life changing moment! You brought humour to my Baggie. A Baggie that I was not getting on well with at all. Especially as the surgeon said that it might be a permanent part of my life as I was going to have further treatment. This group thread had knocked my head back into a good place. I love swimming but with chemo they told me not to swim. Did you swim with your Baggie? Was it ok? I'm even been thinking about going back to work now. Well I've been telling my work place that, since the operation in September and the surgeon said I'd be able to 6 weeks after major surgery. That so so did not happened as I'm one of those people that seem to get all the side effects of treatment so the oncologists tell me :(( but this time I feel the need to get back to the rat race, you know? So how long after chemo did you wait before going back to work? Should I go on holiday before getting back to work? Big big hugs to everyone who has joined in with Little My thread as you all have kept me going, even though I was the sneaky mouse in the corner. Chi xxx
  • FormerMember
    FormerMember

    Hi LittleMy:

    I'm also a lurker - not nearly good enough with words to join in as a warpie but I just wanted to say that I love the analogy about your wedding ring design.  I enjoy reading your blogs and am touched by the camaraderie that you, HilaryB, Scraton and the others share.  It truly exemplifies what this site is all about.  Sending you healing hugs.

    Pam

  • Oh such a lot has happened since you left us all in limbo waiting for farts and poos of course we knew when you did finally manage to fart as a minor earth tremor was reported in Wales at the time.Now the waiting for healing prayer commences " oh lord grant me patience and hurry up about it" its odd what pleases our consultants they must be truly warped people.Why oh why don't the consultants and Nurses know better than to tell you do nothing blahdy blah knowing full well that you can't help yourself but to do the opposite will they ever learn?Goal posts changing is shite your students are so important to you and it's an awful feeling to feel your letting them down the head works fine but the body won't co operate is truly a bummer.Now the healing has started here's hoping it is as fast as she said it would be.So glad that when the nurse cut that purse string stitch nothing fell out or you didn't fall apart and hope you rewarded yourself for being a brave soldier with something very shiny as well and truly deserved.Locking the door whilst doing your dressings is that to stop you running away or from us getting in to rescue you.I wonder if the man in the waiting room was behaving that way to get in sooner might try that myself next time I go the GP.Well four weeks on and you have come a good way so a few more and who knows.I love your choice of wedding ring and what it symbolises beautiful.I hope your bum as time passess also becomes well behaved and shiny you have come a long way and I also hope all the tests have good results.Now that you have lived long enough to spot a grey hair get the dye out to ensure you don't see any more for a very very very long time.Planting seeds and watching them grow kind of symbolic but then I'm warped In the words of Spock live long and prosper LM huge hugs much love Cruton xxxxx sending Bernard back with sustanence xxxx
  • FormerMember
    FormerMember

    Tiedye Liz, I haven't set a date. It was meant to be the end of May'beginning of June, but that is getting close and its in the middle of scans and GC and still not healed and i haven't done anything about it, so I guess it might have to be later now.... July maybe? anyway, i have a reputation for wearing the 'wrong' shoes to occasions and used to drive my mum mad. She even bought me a pair of shoes 5 mins before a wedding once as she wasn' going to be seen with me in a pair of threadbare espadrilles. I got blisters within minutes and went barefoot. I wore electric blue fake ponyskin clogs to her funeral. So, I think we can assume shoes will be boots or wellies or barefoot.

    Sugren, Thanks :) its not that grim really.... or is that just me? hmm anyway it doesn't take a minute to say something to someone and I get so much support on here that I have to give it back eh? I'm amazed you find time to read it haha.

    Hi ground, I have a lot of school stuff i could do at home, timtabling and the like. I guess i will have to settle for that. Problem is I can't focus that long on that sort of stuff.... and some of it is as boring as doing nothing haha. Contrary so and so eh?

    Oooooh hello lurker !!! Chi Wow, nice to meet you. You should say hello more often, we only bite when hungry. I am so glad that we cheered you up a bit. Baggies are just inately funny and laugh or cry in my book so laugh it is... the whole thing is so awful it has to be ridiculous eh? and so pleased I helped you make friends with your baggy. I kind of miss mine now....  sounds like you have been through the mill a bit! I went back to work nearly 3 months after treatment and couldn't cope at all and was so tired even doing part time. I realise now I did way too much way too soon but hindsight is a glorious thing and I won't be told! Yes you can swim with a baggy. I did try out all these caps and small bags and things but in the end, i would just put a clean bag on and swim with it. No problem at all and to be honest, you don't really even notice it under your costume. I was paranoid the first time i went thinking about it falling off or leaking or something but its been fine so do it! I got to the stage where I would just shower with my bag showing too sometimes.... there is a baggy group on here, do join in. Oh and join in warped too please. Don't feel you have to hide, you must see we make new people welcome :)

     Pam hello!!!!! another one :) Now, you write beautifully to me and have you not read all the stuff we write? Its rubbish most of the time... please join in , i would hate for anyone to feel that they can't join in cos they are not good enough with words.. I mean really, I can't even write beacause!... we are not exclusive or cliquey or anything like that... you just need to be silly, well, you know anyway cos you read it. This is site is about support and that is what we do, we try to support others too and I hope you will feel one of the gang even if you don't post but I would like you to anyway.. I may stalk and nag you now hahahaaaaa

    Cruton my lovely you popped in while I was typing this and I can't see what you wrote but trying to remember... I pulled the grey hair out haha and yes, live long and prosper indeed. You are such a friend to me and I really appreciate it :)

    All the hugs to you all xxxxx

  • FormerMember
    FormerMember

    How dare a grey hair appear in one so young! (That must be worth a few brownie points). Well cruton has said it all really and beautifully put too.

    You will get back to those lovely kids and help prepare them for life, and they will be so lucky again. And for all the goal post shifting, it does look as though it will be sooner rather than later IF YOU BEHAVE YOURSELF!

    Packet of seeds?????? Trying to show me up? The only things not dying in my garden are the weeds and my camellia.

    Welcome to the two lurkers, yes please do join in. We can't write either that's why we are always silly.

    Lots of love and hugs to everyone.

    Odin xxx