changeling times

trials and tribulations of eclectic chicken

Remiss of me not to mention remission July 26, 2013

Filed under: cancer,Uncategorized — eclectic chicken @ 4:00 pm

It’s been a long time my little web monkeys. A month or more since I told you I was to have some surgery.

Surgery has been and gone.

Even the laprascopic version of the hemi right colectomy had me in hospital a week… a week involving five days without food… oh go on then we’ll start at the beginning – its a very good place to start.

Into Peterborough City Hospital on the 3rd… this was a fiasco of a day. I arrived for a ten o clock admission appointment and was admitted on paper by a nurse at about half past ten. I told her I hadn’t breakfasted as I’d been confused about the eating and non-eating times, so was rather hoping to be on a ward by lunchtime. I answered a few questions, put some wee in a container and had my wrist ID put on.

Then back out to the waiting area.

Come lunchtime… the lovely nurse took pity on me and came and gave me an egg sandwich and a jelly.

At about 2pm I saw the consultant for about 5 minutes.

At 3.20pm I was taken out of the waiting area and onto the ward. Nearly 5 hours – with about 20 minutes staff contact time and I was told by the nursing staff that this wasn’t unusual.

Now they KNOW beds don’t tend to come available until the late afternoon so why why why ask admissions to come in at 10 in the morning.

But all that aside… I had a room on my own, my own en-suite…ah I though that’ll be for privacy for the bowel prep… they must have me in the day before my op for bowel prep…. but no.

My consultant doesn’t do any bowel prep beyond you have to stop eating and drinking at midnight.

So again…why why why have me in so early the day before. Having done a sterling job of talking me through the whole procedure and done everything humanly possible to allay any fears and concerns they then cock up with a totally stressful and pointless early admissions process.

You know… its that long ago that I can’t remember when I went into theatre the next day… but it was in the morning… the scary bowel surgery leaflet had been wrong about bowel prep…. and also wrong about having a long needle in a vein to monitor my heart. New technology just in is that they sandpaper your skin (its quite pleasant) place sticky receptors on and then you have to lie VERY still for a couple of minutes whilst a computer guages blood resistance around your circulatory system.

And then the lovely theatre staff gave me drugs and…..

wake up in recovery….

I believe when I was sent back up to the ward I was in a great deal of pain as the post operative pain relief (administered via an inflated ball tubed into me close to the exit hole) still had its clamps on. Luckily I was still off my face and have no actual memory of the pain… just of my insistance at some later point that I was still in pain. Not being able to remember pain possibly says how much pain there was.

The pain relief ball was a source of continued grief as the next morning as part of their ‘get you out of hospital quick scheme’ I was hauled out of bed, sat in a chair and told by that evening I’d be walking round the ward.

Fat chance… I discovered instead that my pain ball was leaking from one of its tubes. In fact once back in bed my pain relief formed a nice little pool for me to lie in.

Unfortunately by this point the consultant had gone home for the weekend and nobody tampers with his balls without express permission.

Later that night (being in too much pain to walk round the ward) a nurse came on duty who thought patient care (ie not lying in a wet bed til the consultant comes back on Monday) was more important than his sensibilities about his balls and she deftly unplugged the leaky tube from my stomach and clamped it… lo and behold the second tube appeared to start working and pain became less.

The next morning I farted. I can’t express how important this is post bowel surgery or how long and melodic that fart was which erupted mid sit down on the bed leaving me one leg in the air facing an open door rolling forth like an endless herd of buffalo on an open plain.

Thus Saturday late morning I though I was back on track to go home.

No.

Instead, just to thwart the ‘going home stats’ my digestive system went on strike and intead of going home my abdomen blew up to 40 week gestation proportions before lots of doctors arrived to poke me. The poking resulted in a spectacular projectile vomit (or six) – I think I hit the foot of the bed.

So they stuck a tube up my nose and down my throat…. not pleasant… but very interesting. I continued being sick but now the green sludge shot down the tube and being of a narrower gauge than my throat I could hurl much further…. all the way into a bag by the bed. This all supposedly takes the pressure off your intestines and lets them kickstart themselves in peace.

With hindsight this is whats been happening to me over the last few months and seeing me reporting to A&E…but then it was becuase I had a lazy section of colon that just couldn’t take the strain… whereas this time it was a naughty naughty colon.

Anyway…. next morning… tube out.

Later that morning…unable to drink again even without feeling sick as system began to shut down again…. so I just stopped drinking and asked to stay on the saline drip.

After that it was a long slow uphill process…. I couldn’t drink other than sips and couldn’t bear to put any food in my mouth except teeny tiny morsels that I then chewed a while before spitting them out.

But I did start pooing.

A lot.

And I had to save it all to be weighed.

In order to stop me pooing so much (although they claimed it was a space issue) I was moved onto a ward.

One of my co-wardees was an old lady who wandered the wards at night…. this one expects in a hospital… there’s traditionally always one. What one doesn’t expect is for her to have two sons who come on the ward shouting about their mother being abused (she wasn’t – she had one to one nursing) and proceeding to film her rolling on the bed in pain (she was fine until they arrived – but like most old people wanted to go home so played up for the rellies)… they also filmed the rest of the ward and did lots more shouting… my blood pressure was higher at this point than any other point in the whole hospital experience.

I did complain.

That night when she started wandering again she was put in her own single room.

I think it was in the wee small hours of Tuesday morning I woke up and knew I could eat…. I rummaged for my emergency cookie and lo and behold took a bite sized bite and ate it… and another…and another.

So I was farting, pooing and eating (of a fashion)… the only other box I had to tick was the ‘able to walk upstairs’ and I could go home. I went into serious ward circumambulation training.

I wanted to go home.

Seriously.

On Thursday the consultant said if I could eat lunch and keep it down I could go home.

He didn’t specify how much lunch – so I ate a bit (even after five days of no food hospital food is still pretty awful) and when I asked how long I had to keep it down for the nurse answered ‘until you go home’.

Last minute hitch as Megan turned up to pick me up…. my drugs hadn’t come through from pharmacy…. but I crossed my fingers and said I was pretty sure I had some tramadol at home and went home.

A few days taking it very easy.

Then the fun of a wound infection, trip back to A&E and some antibiotics.

But perhaps most importantly at some point my surgical consultant…and specialist oncology nurse both range to say the section of bowel removed had no cancer in it at all. The last dregs must have died off between PET scan and surgery.

Had the PET scan been later or had I taken the waiting option and a second scan there would have been no need for surgery…. but we weren’t to know that. And given I was already decided that the cancer was growing again I’d have been a neurotic mess if I’d waited… and I think I’m better off without a load of scarred necrotic material in my system.

I’m eating normally for the first time in over a year…. I’ve never been so pleased to see a bowl of muesli and some seeded brown bread.

So thats the upside…. the downside is the last month seems to have set me back energywise. My fatigue is back to ridiculous levels… but hey ho…. back to slowly slowly and build up my walking from scratch again. post chemo fatigue can last as long as 6 months… a year… or beyond. I just have to be patient and keep accepting help where its offered.

And special thanks be to my daughter Meg at this point who moved house in Sheffield, dumped all her stuff in her new room and came straight down to take me into hospital and has been taking care of the dog, the boy, the house and me ever since.

She’s a star. A shiny shiny star.

 

 

 

health and home June 21, 2013

Filed under: cancer,home stuff — eclectic chicken @ 10:51 pm
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First the health.

I saw the surgical consultant this week and it’s looking like surgery is my best option to optimise the chance of drawing a line under this whole cancer malarky. I was however naively optimistic about how much of my inner workings they would be removing and it would seem I’m to have a ‘right hemi colectomy.’ Because of the way blood is supplied to the colon they have to take it out in chunks (a but like pruning a plant I guess… one doesn’t want a section of internal die back)… so I’ll lose the third of my colon plus some small intestine (but who cares about that there’s miles of the stuff) which I wasn’t aware before now had been/is affected.

If Mr Consulant (pleasant chap who has been inside me before so to speak) can get the cancer out through a smallish hole this will be done as a laproscopy but if it needs a bigger hole… they’ll open me up and go the whole operative hog. This will not only be more painful in healing terms but also means a longer stay in hospital.

Anyway… cut, remove, stitch up and then amazingly you can start eating normally pretty much straight away and then they let you go home when you can fart if you’ve had the laproscopic version of the op.

Yup… thats official… you fart…you can go home. (it means the stitch together has ‘taken’ and you’re airtight inside).

I suspect the bugger IS growing again since chemo stopped as the area is tender again and I’m becoming aquainted with my new toilet bowl as I’ve started being violently sick if I over-do the eating. So I’ll probably need that longer stay in hospital, followed by several weeks of taking it easy (just as the fatigue state was starting to lift) that the open surgery recovery requires.

And surrounding my new toilet bowl is my new house. It’s lovely and I’m very happy to be in here. There are moments when I panic about the responsibilty of it all and even worry about when I have to move again… but that’s natural. When all the small things (the leaky gutter, the leak under the sink, the funny noise the toilet cistern makes, a larger than usual bill blah blah) add up to panic level theres a time where you have to freeze and do nothing -ignore the bally lot of it… and then you breathe… a big deep breath and do SOMETHING.

I felt that panic muchly the first week in the house, living with someone elses grubbiness (not worse than ones own…just someone elses), not knowing where things were, noticing all the small jobs that needed doing, not having a car nor the energy to walk far… I panicked.

Gold stars in the early days go to many people but mostly Jane for moving car after car load of stuff on her own and Annie who turned up on day two and top to bottomed the kitchen so I could start putting things in cupboards.

Then I wrote a list… several lists and started working my way through the official things, the things I needed, the things that needed doing.

In line for a gold star at that point was Steve… who I used to call Steve the decorator… he came round to get rid of the pink walls and Peppa Pig frieze for the boy… replacing it with Lapiz blue with some additional chalkboard black on the cupboard door. Whilst he was waiting for the paint to dry he replaced a broken manhole cover outside, slapped some concrete under my back door step and put new innards in the latchy handle on the cupboard he was painting. I just need to nudge him now to come back and check out my guttering. (oh and he showed me how to remove the filter on the extractor over the cooker).

For the first week we also lived without a fridge until I was pretty certain I could get a MacMillan grant to cover the cost. So our eating that first week was pretty basic and depended heavily on local convenience stores. We had rice with a tin of mackeral on top one night… and amazingly when the cupboard is bare and theres no alternative the boy will eat such fare… though he did prefer the night we discovered the local pizza shop have a buy one 9 inch get one free night.

I’ve found one of my skills is in making a house look like a home… it looked like a home by the end of the second day and I think has something to do with books on shelves and glassware on window sills. Helped by the fact that this is a light house that feels airy and my renewed energy started bouncing around the place. Jobs I’ve avoided for years are now things I want to do… every night I leave the kitchen in a state I’d like to find it in in the morning. Even though I have to pace myself to do things and do them in  installments (most of a day to strim the small overgrown lawn) – I get them done.

Small things make me happy. A flowering geranium on the kitchen window sill, washing hanging on the line, my small yellow tin bucket that holds my wooden clothes pegs.

I spend a lot of time sitting at my kitchen table by the open back door doing ‘things’ at the table and am slowly discovering new walks with Lucky.

Tonight I’m on my own. Just me and the dog. Meg has gone over to her dads having been here a few days… she’s coming back next week to help with hospital appointments and boy and dog sitting; the boy himself is having the weekend at Janes.

The house is quiet except for the dog snoring and the clock in the sitting room dinging its dongs (which even I am admitting are a tad loud for the room) I’m lying on my new bed with brass knobs on and once I’ve typed this I have a big stack of library books to attack.

I’m very, very happy.

 

Maybe it is…and maybe it isn’t May 28, 2013

Filed under: cancer,home stuff — eclectic chicken @ 3:52 pm
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I’m sure you’re all (three of you) feeling abandoned from lack of posting….but here I am.

The PET scan was last week and I have been waiting for my appointment with the consultant to get the results – and that happened today.

This week is my stress cluster week… results AND moving house on Thursday.

I saw my GP last week and we noted my black dog is back and they suggested anti-depressants again but I’m hoping once I get this week over and done with – that the depression will lift again and all the positive stuff around having my own place will give me a boost.

Sooooo… anyway… appointment today and when I referred, on Facebook, to this being a Schrödinger’s cat of a week I had no idea how close I was to the truth.

The results are that there is still activity around my colon… the PET scan can show cell activity- what it can’t do is distinguish between cancerous cell activity and the sort of activity caused by having an inflammed and thickened colon. As PET scanners are relatively new technology there also aren’t decades of diagnostic interpretation behind it  to be able to make that judgement call… so it won’t get made.

What they are suggesting I do, is go in for another laproscopy (which is heartening) as the ‘mass’ is now small enough to remove through an equally small hole and I get to lose a small section of colon as opposed to the ‘almost a third’ which was on the cards back in the dim and distant days of having a camera up my bum last year in the ‘before we knew it was cancer’ time.

So…it could be cancer…it might not and we won’t know until I’m opened up. (and the removed portion prodded and tested).

My consultant said in the olden days (pre PET scans) or if I was an older person they’d be happy leaving me with the uncertainty… but as a younger person with responsibilities (and who reacts badly to not knowing stuff) surgery looks the best option.

And I think I agree with her.

Right… now on with the packing boxes.

 

 

A waiting game April 30, 2013

Filed under: cancer,home stuff — eclectic chicken @ 2:16 pm
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Another post chemo slump post…. but this one ‘hopefully’ will be the last.

Number 8 chemo was last Thursday, today was last day of steroids for this cycle.

…and now it’s a waiting game.

Life, even more than it has been for the last five months, is hanging in stasis…. worse than its been before becuase now I’ve done everything I can do. Like sitting an important exam – now all there is to do is sit back and wait for the results.

In this case actually waiting for a PET scan on the 20th May and THEN wait for the results. Which I’ll hopefully be given before seeing my consultant next on the 28th May.

Either way it feels like a rather long, excruciating wait.

I’m not sure what to do with myself.

Its not like I can bugger off on holiday and forget all about it or something as I still have the post chemo after effects to cope with.

But never mind…. and not like waiting for one thing is bad enough. The house buying is grinding along ‘nicely’ all the paperwork is with my solicitor and I guess we are still waiting for the searches to come back. Until it all goes through I’m all excited inside about buying a yellow kettle and a bed and getting all my coloured glass on new windowsills… planning a new garden,cooking in a new kitchen, settling in, cuddling up on the sofa with the boy and the dog – but I don’t want to spend the money or let the excitement out as it feels too much like tempting fate.

The whole bally thing feels like tempting fate…buying a house (or rather half a house…or even more accurately having half a house bought for me) before getting the results of my PET scan. But then… whatever the outcome I need to be in my own place, living my own life again… so I guess I’m waiting for that new life to start too.

 

post steroid slump March 20, 2013

Filed under: cancer,home stuff — eclectic chicken @ 10:40 am
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The weather and I, it would seem are somehow at one… gone is the Spring sunshine of yesterday, the warmth, the blue sky sparkling on the river… here today is iron grey cloud, bone chilling cold and snowy flurries.

Yesterday was all the enthusiasm and energy I could muster, pushing myself to walk the dog, to be up and active, look after the boy, to cook a meal, make those calls.

Today is my post steroid phase… eugh. Flat and exhausted.

A night of wakefulness and sweats and sudden dashes to the toilet in the wee (and poo) small hours of the night.

Thank goodness I got some things moving over the last couple of days because today is fatigue filled… the thought of eating let alone cooking is a mountain to climb. The idea of getting dressed and walking out of the house is enough to make me put my head back under the covers.

Yesterday optimism… today…how will I ever cope on my own?

I will.

How will all these complicated applications and plans all pull together?

But they will.

But yanno….its just a darned sight easier to envision it on my good days.

edited to just add…. just had a call back from local MacMillan nurses – brilliant!

 

could have been better March 13, 2013

Filed under: cancer — eclectic chicken @ 9:59 am
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I’ve not been writing… I’ve been grumpy…. basically I’ve been awaiting a CAT scan and then the results of said scan, to find out ‘what next’. Its proper horrid when your life is up in the air and you’ve no idea how to plan for the months or weeks ahead.

One of the results of this inability to plan is I decided to invite a few friends round for a birthday tea… there… that’ll teach you pesky medics to take away my ability to plan…. I’ll plan just to spite you. Well, to spite you and prove I’m still alive and able to eat meat paste sandwiches and cake.

So, in to see my consultant yesterday and CAT scan results were in… the tumour has shrunk from its initial 8-10 cm to 3cm… which is good. Its only now writing this I realise I have no idea what those numbers mean… is that measurement a circumference or diameter?… the diameter of a tennis ball being just under 7cm the circumference of a golf ball being about 14cm. Was it bigger than a tennis ball…. or smaller than a golf ball? I suspect the former as it used to be visible with the naked eye – though not from the moon. And now its not even findable with proddy fingers in the bath so it probably is smaller than the 5cm diameter of a golf ball.

But… the consultant is happy its respoding to the R-CHOP chemo and lets go ahead and have all 8 cycles of it.

See this is where it could have been better… I’ve been mentally aiming at the 6 of the 6 to 8 cycles… quite a large part of me really hoped this Thursdays number 6 chemo was going to be my last and would be a breeze at that, as it wouldn’t be followed up by intrathecal chemo (been there done that). But now… the point where I was dancing a jig as being over half way weeks and weeks ago…. was the dance of the deluded. Bugger! Okay half of 6 is 3 and half of 8 is only one more… as an equation involving biscuits its fairly painless even calorie wise… But chemo wise….

So, anyway, meh, whatever…. I have 3 more lots of chemo to go…woot woot. I’m tired and starting to look a tad ravaged… my finger nails are shot to fuck and I am getting pins and needles in my fingers from one of the chemo drugs (but thats fine as I can still use my mobile and do up buttons).

But on the bright side…. my long term psoriasis has totally gone… I’m off my anti depressants and a full 8 cycles ‘should’ totally obliterate the tumour. We then follow up with another PET scan to make sure theres no live stuff hanging on in… and THEN I can start living again properly… beginning of May.

 

uneventful but busy March 10, 2013

Filed under: cancer,home stuff — eclectic chicken @ 5:19 pm

Long time no write… its been an uneventful cycle cancer wise… no medical emergencies, no vomits. I felt so well in week two of my cycle I thought it was week three and was walking the dog and moving furniture around…. though that did result in my over doing it a tad.

It just so happens whilst I’m feeling so well that Jane had a trip to Switzerland booked, some media training trip as opposed to some skiing and fondue fun. I’ve had my friend Eleanor here for the duration of Janes absence which has been lovely. But unfortunately my hosting gene trumping my taking it easy gene, plus taking the boy to a cross country event and standing in the cold drizzle for an hour and a half,  and a trip into the hospital for a CAT scan has meant back to bed for the day today whether I like it or not.

Which is fine as Meg turned up last night…. she WAS going to cook me a Mothers Day roast dinner but the over seems to have broken…. so she’s going to cook meatballs instead.

Jane back tonight, Megan off again… Eleanor leaving tomorrow…. and all back to normal…. a few days of taking it easy with my fingers crossed waiting for the CAT results.

 

these things are sent to try us…. February 27, 2013

Filed under: cancer,home stuff — eclectic chicken @ 11:43 pm
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My memory being one of them.

I forgot to take my fifth mornings steroids and didn’t remember I’d forgotten until the early evening; at which point I rang the hospital and they suggested leaving them until the next morning…or face a very sleepless night.

So… I did as they suggested and took them this morning and am now having a mere sleepless night tonight instead.

The other thing sent to try me in my non-steroid slump was the central heating deciding to pack up again. Remember… we had a system flush and a new pump just before Christmas? The new pump siezed and so in my post chemo, feeling the cold, feeling miserable as fuck, haven’t remembered my drugs slump the house sunk back into the icy depths of winter.

I made myself go and check round the system yesterday (mostly making sure the boiler had a light on and no-one had pushed the bread bin back into the main heating switch and knocked it off) – [this has happened several times in the past]. I came to the conclusion (having burnt my fingers on it) that the pump was where the problem lay and I swore at it… hit it…. and tried unscrewing and tightening again the bit in the middle that sometimes encourages it into movement again. [all bona fide plumber skills according to our plumber who came and replaced it tonight].

So we have warmth again….and now I feel like sitting up in bed (its warm enough) I have the hunger upon me… craving…actually craving salted peanuts… tasty tasty fat and salt -salted peanuts are probably one of the top 10 foods I shouldn’t touch with a bargepole… along with barbed wire sandwiches…. broken glass…. lentils and well… you know the drill.

So I’ve perverted that desire into ritz crackers and pork scratchings…. neither of which we have in the house either. And some Jacobs crackers with butter on and a late night bacon sandwich just havn’t filled the gap.

Oh and the cheesecake desire is back…..

Tonight is ‘often’ the night I end up in hospital…. and as midnight approaches I’m starting to feel a tad blase about it… maybe I should sneak downstairs and chance a SMOOTH peanut butter bagel….

Or maybe I should wait until the morning and see if Jane will go and forage my desires at the supermarket.

 

Last Intrathecal chemo… February 25, 2013

Filed under: cancer — eclectic chicken @ 10:04 pm
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In time i shall look back with fondness on my IT chemo….

Actually no i won’t… its a horrible horrible thing and I’m SO glad today was number 4 and the last one. Even if they change my chemo I won’t have more. It’s very much a belt and braces approach to chemotherapy and by god I hope its worth it.

I hadn’t realised how much I’ve been dreading it until I was on the bed with my palms sweating and the thought of outright refusal running through my head.

We had a student nurse in to observe and I doubt i taught her any ‘new’ swear words… but I think she probably got the gist that its not a nice experience.

Having had bad reactions post lumbar puncture I take it very easy on the lyng flat and regaining the vertical at some point…. I went in at 1pm.. had the procedure about half past and left the unit at about ten to six.

Most of the afernoon was therefore me on a saline drip staring at the ceiling…except the bit where I caught myself snoring.

I think I made things worse for myself by bemoaning the fact that hospital beds no longer come with radios in the wall behind to listen to…. so the lovely nurse brought me the ward radio (it was a quiet afternoon and no-one else seemed bothered) but then all we seemed able to tune into was Kiss FM…. and nearly four hours of a ceiling and Kiss FM is ALMOST as bad as having a needle stuck in your spine…. or eyeballs even.

Image

 

only the registrar…. February 22, 2013

Filed under: cancer — eclectic chicken @ 1:10 pm
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…so that’s okay then.

That explains my overlong visit and descent into worry… the person I saw on Monday is a new(ish) and enthusiastic registrar. No wonder I was in there so long.

Yesterday was R-CHOP (chemo) number 5.

Having had a vomiting session the day before (very like the one at the beginning of this cycle- but not worth going into hospital with) I was weak as a kitten and slept through most of the chemo drip, waking up in time for my ham sandwich and trifle to be brought to me.

As the nurse in charge of my chemo session had to go and book me in with the consultant for my intrathecal (lumbar puncture) chemo I asked her to also check which scan I would actually be going for as Tuesdays doctor had changed the original referral to a PET – which I could see the point of more -especially as the registrar (well..i know he’s a registrar NOW) had said a CAT scan was just a glorified X-Ray.

She came back with the news that the CAT scan stands.

Not sure the registrar still will much longer if he keeps messing with the consusltant 🙂

So… thats sorted… and with that knowledge it chips away at  the hypothetical future worry fest he initiated… It’s nice to know theres a plan B and a plan C before they give up on me….but I think I prefer the ‘lets get this plan over with before opening the next door wide open’ method.

So…. CAT scan a couple of weeks from now and THEN I look at the options.

With my consultant.

..oh and Monday will be my last intrathecal chemo… thanks christ for that!

 

 
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