changeling times

trials and tribulations of eclectic chicken

What a pain! November 24, 2012

Filed under: cancer,out'n'bout — eclectic chicken @ 4:56 pm
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s’been a wobbly week painwise… being sent home with paracetamol from the hospital… having it upped by a GP to low strength co-codamol…. followed the next day by my usual GP upping it to high strength co-codamol.

By Thursday I hadn’t had much sleep… I ended up spending much of Thursday night (having realised I’d already gone over my days tablet limit) in pain and lying in the dark popping my hernias back into place.

I’ve since decided they come back out even if all I do is lie still so unless they really nip I leave them be…. there’s only so much space in there and something has to give.

Friday I went back to my GP and he upped me to tramadol… which if I try and just take the drugs and live a normal day/night pattern don’t work.

I’m finding my days rhythm… take a tablet…. cop two or three hours sleep, wake up, eat and drink and wander around until tired (about the time it takes to make poached egg on toast and eat it) then go back to bed and read or watch tv with the boy or whatever until the next tablet.

This means instead of lying awake in pain waiting for the dawn last night I got up made buttery toast and hot ribena, pottered round the kitchen and miraculously the pain eased. Went back to bed and read and computered until I could take another tablet.

Its only a matter of days until my chemo starts and as each day passes I can feel Grendel growing, putting more pressure on my insides… so whatever it takes is what I need to do… and if all else fails there’s still morphine to take.

Supposedly the relief from shrinkage can happen even after the first bout of therapy…. I bloody hope so.

Oh and did I mention the day of my first chemo session is also the official opening day of the Peterborough City Hospital…. William and Kate will be visiting.. like me they are spending the whole afternoon there. Deep joy: I get injected with chemicals AND the chance of being cornered by royals. The hospital rang to remind me to take my appointment card or I won’t be able to get in!

But more importantly on the visitor front my daughter is coming down to sit with me for the first long session…. she has some reading to do for an essay and heard there was free food. 😉

 

 

Radio(2)Therapy November 14, 2012

Filed under: home stuff — eclectic chicken @ 4:27 pm
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Well, I really craved a spinach and feta parcel and a piece of cake from the bakery in Stamford today and as Jane was doing her banking she tried her best… they’d sold out of spinachy parcels so I had spinach and ricotta pasta from M&S instead. Nothing like what I wanted…. but I ate it without complaint becuase it was well meant and I’m trying to be easy to look after.

After lunch watching the news I lay down on the sofa and suddenly realised how comfortable it was and asked if there was a blanket handy – there wasn’t but Jane went and got one and threw it over me…. mmm warm and comfortable. Quite a rare combination in our house at the moment.

As I started to drift off she changed the television from the news to Radio 2, playing at a level usually chosen by old deaf people whilst drying their hair with a washing machine on spin cycle in the same room…. normally I’d have asked for it to be turned down….

but I was so warm…. so comfortable….

me and my innards resonated to Neil Diamond and I slept.

Solid… for two hours when I woke up to Donny Osmonds voice and the whirlwind that is the boy and Jane returning from the school run… and at the same time the phone rang….

…amidst all this (as the phone was for me) I got up very groggy and picked up my left over chocolate cake from lunch for company and realised I felt groggy but really quite strange.

I talked on the phone (college ringing and no I’m not going in I just woke up) and Jane spoke to me and I snapped at her as I felt so weird.

And then I realised what it was….and promptly burst into tears.

No pain.

Not a bit…

I apologised to Jane and had a cup of tea.

I think I cried becuase crying before has come in very short bursts becuase it hurt more to cry than not to…. I apologised to Jane becuase she’s being brilliant and doing her best and I had a cup of tea becuase theres never a bad time to have a cup of tea.

It just feels very strange and lovely to be totally pain free for the first time in weeks… as I type I can feel it creeping back. Whether the sofa is just comfortable…. whether the new pain killers are kicking in a bit or whether it really was the healing art of radio 2 on full belt… I dunno.

But it felt good.

 

The pains formally known as my gall bladder. October 15, 2012

Filed under: home stuff — eclectic chicken @ 10:58 am
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I know you are all on the edge of your seats to know about my health….

(for those who aren’t there are other posts available on cheerful topics such as depression, educational standards and dementia).

Or of course there are other blogs available.

So… me and my pain and the lump just to the right of my belly button… the lump that hides from the medically trained and the pain that only occurs when I’m not in the presence of the aforementioned medically trained, went to see the consultant.

Having decided gall bladder is the easy option, given the lump in my side that makes non medics leap backwards with concern. I argued the case for it being gall bladder… provided evidence of cheese eating and tales of vomiting.

I’m pretty sure I persuaded another medically trained person that I’m highly strung, neurotic and possibly, delusional.

But he offered up Crohns Disease as an option based on my symptoms.

And thence to the couch for the prod… I aimed him in the right direction and lay back.

He didn’t say ‘bloody hell’…doctors don’t tend to do that… but I think he was impressed with the size of my lump.

He lowered the tone a tad by calling it a ‘very large bowel mass’ and finally put my gall bladder theory firmly to bed (it’s nowhere near where my gall bladder is).

But it’s nice to be taken seriously… I suddenly felt less mad and a lot more special…. though in this case I’m not sure special feels totally wonderful as I’m being fast tracked for a ct scan and a endoscopy (also fondly known as the camera up the bum experience).

Since then I’ve had another night mostly spent vomiting and lying on the bathroom floor, and now I’m eating jelly beans and putting sugar in my tea and syrup on my ready brek my weight loss seems to have slowed down and i’m hovering at about 10 stone 6.

But at least something is happening.

Back to see the consultant the end of this month, the edoscopy booked… my pack full of information and bowel clearance drugs has arrived and i’m just now waiting the ct appointment.

It used to be that gall bladder was the easy option to believe in… I’m not sure now what is the easy option…. Crohns is fairly easy to manage with drugs and diet…. but niggling at the back of my mind, until the scans are done, is still the dark spectre of  ‘the large mystery lump’…. I’m trying not to be morbid… but in the middle of the night when the pain stops me sleeping (any movement involving stomach muscles irritates said lump) it’s hard not to think the worst.

 

 

Sods Law September 28, 2012

Filed under: home stuff — eclectic chicken @ 1:10 pm
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Never let it be said that I don’t learn from my mistakes… but let it be known that Sods Law overrides learning from your mistakes.

I’m still suffering the ‘pains formerly known as gall bladder pains’ plus other random abdominal various pains which may or not be related to the ‘pains formerly known as gall bladder pains’… yanno the ones that got worse and more insistant since that last GP told me it can’t be gall bladder have some Fybogel in case its IBS.

Anyway…. I feel a little like the population of Naples at the moment… long overdue an eruption. The ‘swelling inside of me formerly known as the gall bladder’ has been rock hard since the last one just over two weeks ago.

Hard in a way that made Annie jump away saying something like ‘oooch that shouldn’t be there’ when I got her to feel it the other day.

After supper last night I started getting my ‘sort of contractions’… heres where the learning curve comes in… the last couple of times this has happened I’ve said things like ‘I’ll see how it goes’ or the even sillier ‘I’ll take a load of anti spasmodics and pain relief and hopefully sleep it off’…. this approach has lead to screamingly wordless agony and an inability to move let alone get to A&E… the switch from ‘hmmm i can cope with this’ to ‘ohmygodithinkimgoingtodieandicantmoveandithurtsSOOOOOOOOOOOOOOOmuch’ is quite a sudden one.

So lying on the sofa breathing through my contractions (i knew those child birth classes would come in useful at some point -they’d be otherwise wasted as i had two C-sections)…I hazarded to Jane that, as it hurt even with drugs inside me, it might be wise to go to A&E. She thought so too…especially as I was at a stage where I could drive myself and ring her when I got there to tell her I hadn’t swerved off the road in agony.

So I went to A&E…contractions coming every five minutes or so.

I waited (as you do).

The contractions lessened…. they took my pulse/blood/blood pressure/wee…and i started to feel a bit fraudulent for being there…. still… no worse than most of the healthy looking people who frequent A&E at half eleven on a Thursday night.

A nice Portugese doctor eventually took me into a cubicle… I explained that sometimes these episodes turned nasty very fast…. and it might be my gall bladder…. and I’m terrified of being at home again when it happens.

But as it hadn’t turned into screaming agony there was nothing really he could do other than send me home feeling slightly like a deranged bag woman who just wanted a bed for the night.

Actually thats probably what I did want… a safe bed with a doctor near by so I could sleep.

And no he couldn’t give me any pain relief that would last right through the night.

But he did give my abdomen a professional feel just to make me feel better…. he didn’t… he couldn’t feel any swelling although he could ‘feel my pain’.

At this point I’m afraid I cried.

‘are you sad?’ he asked.

‘no’ I replied ‘I’m bloody terrified.

So  me and my ticking internal time bomb went home…. I considered sleeping in the car park… but the cost seemed prohibitive.

When I got home I laid on the floor and made Jane feel my abdomen…. ‘bloody hell’ she said ‘whats that big lump?’

Sods Law of course says the ‘pains formerly known as gall bladder’ didn’t develop into a major attack… they remained just enough to merely rob me of any attempt to turn over in bed… or sleep comfortably.

Still…. only 10 days til I get to see the consultant.

 

Seeking comfort September 15, 2012

Filed under: cancer,home stuff,thinks — eclectic chicken @ 4:00 pm
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I’m seeking comfort this afternoon as I’ve been in pain pretty much all day.

The dog (recovering well but still not chipper) and I have spent most of the day on the sofa, reading, snoozing, and trying not to lick the operation site…. (me the first two, Lucky the latter two)… its definitely one of those days I’d like to comfort eat…. buttery crumpets, crisps, cake, a bacon sandwich perhaps.

But of course I can’t.

To try and escape the pain I thought snuggling into a warm bed would be pleasant… but my bed becuase of my back isn’t like that… it’s a hard bed. It’s not snuggly and my duvet and blanket are utilitarian as that’s what I like at night.

Mmmmm…. a big squishy bed, with plumpy pillows galore and a tray of comfort food.

Maybe in bed whilst I nibble my way through my goodies I could watch some comforting tv…. a familiar film.

But the pain is a tad too distracting for that.

Still…. I have a stack of new library books… and that’s what’s filled the day so far…. still… reading would be much more pleasant with the occassional square or chocolate… maybe a bowl of gathia mix.

…or a hug.

Hugs are always good… they can fill the void that potato cakes and bourbon creams cannot.

But a hug is probably as likely to happen as someone appearing on my doorstep with a fatless trifle this afternoon.

When pain is ongoing it drains you, physically and emotionally…. today I want to be small and curled up warm on the sofa, to have the telly on in the background, a good book to read and someone to bring me things to eat that won’t make the pain worse.

I want a Saturday afternoon circa 1976.

I want to be comfortable.

 

my mother, my gall bladder and a helpful Viking August 7, 2012

Filed under: home stuff — eclectic chicken @ 7:08 pm
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A swift overnight with my bear on Friday night on the way to pick my mother up… sitting in the car for three hours played havoc with my gall bladder and associated (hopefully associated)! pain and so I had a night of gentle and solicitous bear and a good and fear free sleep being held…

…and then the week begins… I have my elderly mother staying for a week. She comes over more regulary now under the cover of having her hair done over the road… mostly it gives my sister a rest but probably also gives my mum one too.

It’s hard to tell by random visits how bad her dementia stuff is…. supposedly when at home she wanders often and is picked up heading out of town and has got to the point where she can’t make a cup of tea. So I don’t let her go out unchaperoned… and she seems fully able to make tea…and coffee and is still a dab hand at washing up – which is what i like in a visiting relative.

Having her here occassionally is, no doubt, VERY different from dealing with her daily… I’m able to take her forgetfulness with a pinch of salt and just build it into, as  I would any other disability,  the way I deal with her.

I quite like that she hands out totally random birthday presents as it makes every day sort of exciting… her choice of Christmas presents over the last few years has become more and more bizarre…and as a family we love that. Its like the mythical aunt who knits weird jumpers… you can roll with it and love it or you can whinge they don’t fit.

She thinks the dog is female and calls Jane ‘he’… but does know she’s Jane. Most nights I show her to her bedroom and she’ll happily ask if she’s forgotten where something is… it means I sleep on the sofa when she’s here to give her a bedroom as we found she just got too confused not going upstairs to bed.

Yesterday we went to see the recently revamped Peterborough museum. Sat in its rather pleasant cafe and me and the boy were totally tickled by Granny attempting to go to the toilet through the emergency exit (the door NEXT to the one marked toilets) and setting off the museum alarm system… a handy re-enactment Viking ran over to steer her right and off she pottered without turning a hair and seemingly oblivious to all the fuss of security men and alarms… just a shame the Viking was in his re-enactment day wear and not full battle dress.

Today I’d planned to take the 7 year old and the (nearly)86 yr old to see Ice Age 4 but my gall bladder played up and eventually I gave in and took a co-codamol and fell asleep on the sofa for about four hours…. Jane has taken them this evening instead and i’ve had more tablets and hopefully after this will give it some early night zzzzz’s.

The positive side of the agony and new improved almost fat free diet is that I’m still losing weight… now my weight starts with an 11 for the first time in several years and I’m starting to dig things out of my wardrone that have been stuffed to the back ‘in hope’.

The fear of more pain tends to keep me off the cakes and crisps and biscuits and fatty goodies and processed junk…. and I’m even starting to think of healthy things I’d like to eat… I dreamed of spicy chickpeas and brown rice the other night.

Thats got to be a first.

 

Dilation for dummies July 21, 2011

Filed under: Uncategorized — eclectic chicken @ 1:55 pm
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When I first found out Jane had to dilate I thought it was something like a speculum that you had to jack up inside your new fanny.

What it actually is is a couple of dildos (but you have to call them dilators)… three times a day for the first 6 weeks (and then at lessening intervals until it becomes I think once a month 2 years post op) you have to lie down relax and coat the dildo in lube and insert it into your new vagina for a set amount of time. This stops the new hole closing up…. expecially as to make the new hole they had to drill through pelvic muscle and muscle as a rule tends to like to go back where it used to be.

This has to be done regardless of catheter, bruising, blood loss, and pain.

At first it appears to border on the traumatic… it gets easier quite quickly… and i guess the sooner you can find some pleasure in it the easier its going to be to have a decent relationship with your fanny at a later date.

I know women who have had an episiotomy in child birth who havn’t wanted to put anything near their bits for months later (certainly way beyond the 6 weeks recommended when you have one). But a trans woman has to gird her loins and start almost immediately…. pushing a blunt object into a new and unknown void.

Anyone who has gone through grs deserves a medal… and cake…and flowers and all round absolute kudos.

There were times when I had my babies where I wanted to stop and go home (and with the first one actually cried out for my mum)… until the moment the babies were laid in my arms i would have quite happily reabsorbed them.

But transwomen are driven…. if they get this far they really really need it.

After all Janes pain…. and through all the pain she still has to come she says its worth it.

I pity the next fool to say she may have done this on a whim.

 

Helluva day

Filed under: Uncategorized — eclectic chicken @ 1:21 pm
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When we left Jane on monday night she was decathetered, had had a poo (with some fear and wailing and several chemical interventions)) and was on target for coming home the next day. We arranged that I’d have a lie in and breakfast as amble down to the hospital mid morning and help her pack.

But Tuesday morning three things happened simultaneously, I got up at seven to have a wee, the boy sprang to life and wanted the tv on and I got my first text of the day off  Jane saying could I go in as she was in pain.

By the time we got there she was in so much pain and had been for a while that it reall y wasn’t somewhere i wanted to take the boy… so I plonked him in an empty room with a tv and went to find a nurse.

Jane was in a huge amount of pain and no-one knew what it was. She’d been scanned and her bladder was nearly empty… my personal diagnosis was trapped wind.

The long and short of it was that Jane would have to go back into theatre to see if they could work out what was causing such distress.

At this point I was in a blind funk… I had the boy to look after but wanted to be near Jane.

But small boys get priority at times like this and so we said a brief goodbye to Jane (who wasn’t screaming at the time as she was on her bed pretending to be a table… a comfortable  position and an explanation that once again, i suspect, expanded the world view the boy has of grown ups being totally bonkers.

The boy and I returned to the hotel to have breakfast, at which point I cried all over my sausages and the very sensible small boy took charge and suggested as he was homesick he’s like to go home but I could come back and look after Jane.

By the time we returned to the hospital with our new plan Jane had organised with a friend to meet me part way to drive the boy the rest of the way home. My daughter Meg (a much unmentioned star in my life, who at eighteen is capable of taking on most things was on stand by at home to receive the boy), and Janes sister was on recall to return to Lincolnshire again.

The day was further complicated by the aforementioned friend taking the top off her toe on a computer case (luckily she drives an automatic) and me turning left onto the M1 not right and having to drive up to Toddington as opposed to nipping to scratchwood to liase with said friend sporting a fairly bloody toe bandage.

Quick turn around and drive back towards brighton through torrential rain that had the traffic down to 20 miles an hour at one point.

I got to the point where I knew I wouldnt get back to jane in time for her to go to theatre but hoped i might get back for her waking up post surgery.

I did.

Jane had been recathetered, her haematoma (which had been the size of a grapefruit was a lot smaller) had been blocking her urethra and it transpires that the machine that said her bladder was empty was broken… and she had been in extreme urine retention. (something the anaesthetist described from personal experience as worse than a broken leg).

She woke in another morphine haze… which wasn’t quite as entertaining as the last as she was talking total sense but later had absolutely no memory of the half dozen totally cohesive conversations she had had.

 

 

 
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