changeling times

trials and tribulations of eclectic chicken

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.

 

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.

 

Attuned to temperature January 21, 2013

Filed under: cancer,home stuff — eclectic chicken @ 11:00 am
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Still at home… cross fingers touch wood on day 13 of a 21 day cycle.

I did pack my bag for hospital late last week as I at last succumbed to the chesty cold Meg had when at home. I’d held it at bay for a week but eventually I guess it whittled away my resistance and got me.

Of course my temperature jumped up a degree (one learns to be very attuned to temperature). Luckily that was the day the hospital rang me with my 7 day post chemo courtesy call and they suggested rather than sit and wait for it to spiral and go into hospital I should ring my GP and tell him ‘the hospital says i need antibiotics’.

One home visit later and I have antibiotics.

Which indeed seem to have held my infection at bay…. but its been a seriously grotty few days. I hardly ever get colds and coughs.. but this has been a doozy… but my temperature has (until last night) never peaked 37.8.

Last night it hit 38 degrees…. so I pretended I hadn’t seen it… and took it again twenty minutes later (after taking my antibiotic) and it was back down to 37.7 (well… it’s snowy out and Janes ill too and I REALLY don’t want to go back to hospital).

Jane has caught the same lurgy and got out of bed on Saturday and fainted in my bedroom doorway. It didn’t help things that when I eventually said she could stand up again she stood and banged her head on the low door frame.

Last night I had another sweat fest and this morning my nose has ceased its sludge pump impression and my temp is back down to 37.1. So hopefully that’s broken the back of it….

…and talking of backs… I think too much time in bed is taking its toll… my back is starting to complain… strangely enough its flaring up around where they do my IT chemo… so I’ve necked some co-codomol and am going to sit upright, read a book and watch the snow outside.

 

 

catching up January 9, 2013

Someone sent me a note of slight concern today as I’ve not been blogging… they were worried about me being bogged down by my chemo.

Actually its quite the contrary… the last few days (maybe as much as a week – lucky me)! I’ve felt pretty much normal… the urge to try and fit three weeks worth of life into a weeks worth of having muchos energy has been almost over-whelming.

But no…. I know to try and conserve my energy… as I start to run up stairs I say ‘no -walk!’ to myself…. and remember to eat proper regular meals – we don’t want all those additional calories to go to waste before they are really needed, do we?

Feeling chipper has made me realise just how little I’ve been out of the house (other than for hospital appointments). So highlights of the week have included a visit from ‘he who shall not be named’ bringing Christmas presents, bonhomie and a trip out to a local pub for a sandwich. (and a slice of white chocolate and raspberry cheesecake).

An overnight stop at Annies for veggie sausage, chips, fried egg, cheesecake (can you see a theme here?) and a game of charades and general larks. Can’t remember when I last laughed so much… the boy at supper time asked who was the prettiest person at the table (bear in mind three gorgeous teenage girls were present)…so I put my hand up and said I was and with perfect comic timing he quipped – “not you baldy!”

And then yesterday Meg and I went and brunched at our local bikers caff (or ranch house as they prefer to be called) and stuffed ourselves with a build your own breakfast, mug of tea and a piece of excellent key lime pie (wot no cheesecake!?!) each…. I felt totally food satisfied and even braved baked beans!

…and then today… back in for my third chemo session (hopefully that puts me at a hypothetical half way mark)… I can feel the poison creeping round my body already (no morphine to numb or distract this time). When I got home I took the dog for a short walk…. it could be my last walk in the fresh air for a week (though i have the treat of IT chemo tomorrow back at the hospital).

deep breath…and round we go.

Feels horrid… feeling so healthy and then having to go down into the cycle again.

 

It’s beginning to feel a lot like cancer…. December 24, 2012

Filed under: cancer — eclectic chicken @ 4:55 pm
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(all hum along now….)

Second cycle of chemo and like a 5 year old expected to go to school Tuesday as well as Monday… and slowly dawning on them that they have to keep on going whether its fun or not, I’m slowly waking up to the reality of a long haul.

The difference between being ill and taking some medicine to get better and being ill (well …self destroying) and poisoning oneself to out-poison the interlopers is HUGE.

Saturday night found me with a post lumbar puncture headache (well…i know that now..and also am told the best thing for it is Coca-Cola) trying to juggle phones, emergency services and sick bucket becuase I thought I’d be alright on my own for a couple of hours whilst my designated carer – my daughter in this instance- went to a late night showing at the flicks).

No.

She never got to the end of the film… but was still the fastest option for getting me to A&E and coped brilliantly with me vomiting in the passenger seat as we sped through the night…only stopping once to empty out the sick.

Arriving in A&E, they were forewarned by haemotology…I had my magic ‘i might die’ laminated card… but I think what got me straight in a wheelchair and into the depths beyond the waiting room was the chemo haircut… wild eyes…pj’s and fluffy slippers and..oh… I was clutching an old porcelein potty as a sick bowl.

It was more One Flew over the Cuckoos Nest than Love Story 🙂

So another 24 hours in short stay emergency… where this time I felt in total safe hands.. they remembered all my drugs.. and I got an emergency referral to a dietician (who says if I feel like chocolate eclairs for breakfast I should just go with the flow and the calorie intake…andI’m not going to disagree with that)…

The upshot is stay as flat as possible… drink as much as possible (these two things are usually reversed at Christmas I know)… and hopefully the headache will slowly go…

… this morning I managed toast and a shower (not together but both upright activities) which didn’t result in me wanting to curl up in a ball and sleep in agony for several hours….. So they said I could come home for Christmas.

I’m not a fan of Christmas… I’m a bit bah humbug and curmudgeonly about the whole thing as a rule… but I did cry (just a little bit) when the doctor said I could come home.

 

disorganised until the last December 21, 2012

Filed under: cancer,home stuff — eclectic chicken @ 11:11 am
Tags: , , , , , ,

Well… supposedly the world will be ending before I finish this post – so it won’t much matter that I’ve totally not got Christmas together this year.

Apologies to those of you who usually get a card off me… I just havn’t got my shit together except the ones the boy can drop round the neighbours.

Bigger apologies to those who usually get a present off me… If you get one it means I know something you like thats always welcome and I didn’t have to walk far to get it.

It’s been a difficult month (no shit)!!!

…and I’m now into my second cycle of chemotherapy… this time I didn’t just have the intravenous four hour (two hours shorter than last time) epic but also had to go back the next day to have some ‘hopefully’ preventative spinal chemo. The actually procedure doesn’t take long… they remove about 5ml of spinal fluid (it’s totally clear ya know) and replace it with a similar amount of magic chemo drug… you then lie flat for an hour or so…and then start raising the backrest on the bed slowly up to sitting up position… hoping as you rise that the ‘pounding headache’ doesn’t kick in…for then you must return to recline and miss school out time.

We managed to leave the hospital in good time… but thanks to traffic were late for school anyway.

We really should learn these appointments always take longer than you think… usually becuase of a lack of staff who can be spared to chaperone the doctor.

…and following on from last months debacle where I didn’t want the chemo in my already dodgy lumbar joint… this time the doctor still couldn’t promise anything but did aim as low as he could to stay away from it… some hospitals have handheld sort of X-ray gadgets for this sort of thing… but Peterborough Hospital is already in too much debt I suspect to be buying such contraptions… though it does sound the sort of thing there should be an i-phoney sort of app. for.

But returning to today…. I feel like shit…. moreso than last month I suspect as my morphine buffer has nearly gone (boo hoo)!

And back to the theme of apologies… I had plans to maybe make it back out to the shops today… as I managed a short dog walk round the graveyard yesterday… but no.  I’ve zero energy… feel sick…got a headache… it just feels as if my body has been seriously poisoned by injecting stuff into it… oh! it has 🙂

Luckily daughter dearest got home yesterday…. I made something vegetarian involving sweet potatoes and aubergine and tomato passata and haloumi cheese as her boyfriend has gone over to the non- meaty darkside… and I think eating (admittedly well cooked and mushy) vegetables after a spam and mash diet was a bit of a shock for me…. back to the ribena for my vitamin C methinks.

So if the world doesn’t end I hope you all forgive me for not being more organised on my good days…

and if the world does end… who gives a flying fuck anyway.

 

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. 😉

 

 

 
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