changeling times

trials and tribulations of eclectic chicken

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.

 

 

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.

 

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.

 

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!

 

egads… this glass may not be totally full but actually half empty February 19, 2013

Filed under: cancer — eclectic chicken @ 7:30 pm
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You know what I hate?

When medical bods disagree with each other.

I’m up for my 5th R-CHOP chemo on Thursday and then my consusltant had me down for a CT scan…. and after that they’d make a decision as to whether I’ll be having the rest of a 6 cylce course (ie one more) or an 8 cycle course (3 more) – I’m sure you can guess which I was hoping for.

Today, I turn up for my pre-chemo blood letting and appointment with the consultant and see someone different as my usual bod is off today.

I was in there talking to him for an hour!!!! as opposed to the usual 10 minutes or so…. which was useful as we had a good chat about all sorts of stuff and he drew me diagrams.

But he couldn’t work out why I was down for a CT scan…as that won’t show much at all… he thinks I need another PET scan (which shows up what is dead and what is live tissue).

They can then compare my last PET scan results with the new results and see if the R_CHOP is still making inroads into killing off the lymphoma or if its done as much as it can and is now just holding the bugger at bay from coming back.

So cross fingers that a)consultant A doesn’t come back and change the decision for a second time as nothing makes me feel more uncertain than medics not showing a united front and b)that PET scan B shows a lot less live activity.

If this isn’t the case they’ll ditch the R-CHOP and give me something stronger… shit and death R-CHOP is nasty stuff (so nasty they don’t tend to give it to old or frail people) but I don’t relish the thought of something stronger one little bit.

I’m told they’ll personalise things a lot more if we give up on R-CHOP.. that I may get longer rests between chemo sessions if need be… and to ‘trick’ the cancer they’ll probably give me a dose of chemo thats ten…or 50 (lets just call it umpteen as my memory is so shit) times stronger than my present chemo – a dose that would take about three months to recover from…. but luckily before they do it they take a load of my stem cells and give them back to me afterwards to give a swift boost to getting over the experience.

…..but… the medical man said…obviously taking pity on me making a mess of my mascara and wiping my nose on my hat as I’d forgotten a handkerchief… that’s all hypothetical as your PET scan could be very good.

My own damn fault for being optimistic about all this so far…. a quick glance at the not so optimistic and I’m a bit of a wibbly wobbly wreck.

Cross more fingers, light another candle and turn positive thoughts up to 11 please.

 

Interminable medical stuff…. February 8, 2013

Filed under: cancer,home stuff — eclectic chicken @ 4:50 pm
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What’s that?

You wanted a blog about my medical emergency vomiting skills and what you got was a ramble about the National Curriculum?

Sometimes dear reader(s) [in case both of you look in on the same day]… you are so predictable.

Meg has been at home… originally with the intention of covering a day and evening where Jane was in London – but the London trip was cancelled so Meg just made herself generally useful – keeping me entertained, lifts to appointments, distracting the boy and the dog (sometimes at the same time) and cooking me things I fancy to eat.

This time she caught me on my steroid days on which, if nobody feeds me, I will eat my own feet and my elbows too.

Her final days cooking was THE. MOST. AMAZING. cake. Image

Its a gluten free cake.. so its base is ground almonds… its chocolate and orange, almond cake and it has cherries on the top – so the theory was it was almost a fruit salad for someone who doesn’t get to eat much fruit and vegetables.

And to go with the cake… a beef stew…. weeeeell… it started off as a vegetable stew with some beef in it but once I’d crossed off all the veg i’d struggle with or don’t like it was a beef and carrot and neep in beery gravy stew with DUMPLINGS… big dumplings.

I have to admit… I ate three.

And quite a lot of cake.

And stew.

And the truth of it is… that THAT sort of thing isn’t what’s meant by ‘little and light and often’.

(though the dumplings were admirably light by dumpling standards).

So not long after Meg texted me to tell me she was back up North I decided that I was feeling kinda queer in a…distended stomach….headachey….crampy….shallow breathing sort of a ….and then I was sick.

I woke Jane up… rang the hospital (who said I should report to A&E)…got dressed… woke the boy and we all bundled into the car at about half one in the morning.

Blah blah blah…. A&E….copious amounts of vomiting (proving once and for all I really should chew my food more as well as eat less)…. there even came a point where the best option I could think of was to lie in a bed and shit myself…. except… it wasn’t happening.

When my system shuts down like this its like it just gets stoppered where my colon is encircled by the lymphoma and anything below that just carries on as normal and anything above gets thrown back up violently and painfully. Along with a good dose of the shakes as all my blood rushes to protect my internal organs.

(enough information yet)?

Eventually it started to calm down but they’d efinitely be keeping me in… Jane and the boy went home.

As the hospital was chocka and there were no beds on the wards to be had, the hospital kindly brought me a bed down to A&E (as opposed to a trolley which doesn’t count in their bed providing policy) and me the bed and a friendly commode sat in a small side room and waited until half eleven the next morning for a bed in Emergency Short Stay….

…and THAT’S how ill I felt… I didn’t complain about going to ESS at all.

Actually it was a bit like Waiting for Godot in there…. a ward with three old ladies, very old ladies. I’ve decided there are two main catagories of old ladies… happy ones and miserable ones. There was one of each on my ward, plus one so out of it it was hard to tell.

The miserable one spent her time doing three things…sleeping…eating and complaining to her family that she wasn’t sleeping and eating.

The happy one I would have brought home, even though she couldn’t toilet herself but they moved her to another ward before i could persuade her.

I hope I’m a happy old person.

At supper time I went mad and had two teaspoons of orange jelly before Jane and the boy visited and then I was asleep and seriously dribbling when a nurse came to tell me they had a bed up in Haem/Onc.

As you all know… I LOVE heam/onc.. there’s nothing like specialist staff to make you feel special and nothing like other cancer patients to know that whatever weird shit your body is throwing at you its fine ‘cos cancer’s a bitch.

The first thing heam/onc do when you arrive to set themselves apart from ESS is ask if you want another pillow…. some people even have three pillows. Two pillows and a working drip stand and I’m happy.

This morning my body took on board two slices of toast…. which were weird. Toasty… almost bread like and there was some warmth involved that actually melted butter. I think Mark that pushes the food trolley (I think he’s officially a ‘ward host’ -and one of THE most cheerful men on the planet) may have made some sort of step for toast and mankind in the storage of hospital toast… or if not him… someone.

And then my body decided what it likes best in the world isn’t vomiting but shitting.

(nothing to do with the toast…. just process)

As with any good organised hospital the registrar came round early morning and told me my problem was probable a chemo side effect (combined with being a silly sausage with my eating) and I’d be able to go home ‘sometime’ over the weekend.

shit. my weekend is all planned…Annie is coming to stay…we’re going to crochet and drink tea…and eat…erm… Annie is going to eat cake. Not me.

Luckily the registrar went away and came back as part of a posse along with my lovely consultant who agreed that having diarrhoea in your own toilet at home is a lot more pleasant than doing it anywhere else… so I could go home as soon as I had my letter and my canula out. (I was very careful to avoid eye contact with the registrar at this juncture in case they conferred).

Phone Jane for lift.

Canula out (about time as arm swelling – I think I’d hit saline drip saturation point).

And off home – asking them to stick the important discharge letter in the post.

 

gosh…so this is what normal feels like January 29, 2013

Filed under: cancer,home stuff — eclectic chicken @ 7:46 pm
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I’m in my ‘good week’ of my three week chemo cycle…well… usually its about a week but this cycle its been foreshortened by the stinky cold that lingered and lingered.

Yesterday I felt quite chipper and was booked in for a PETCT scan down in Cambridge. The mobile unit that in the leaflet looked to be parked in a green and pleasant land turns out to be in a car park at Addenbrookes hospital. They inject you with radioactive glucose (even the syringe is lead enclosed..and the man that does the injection scarpers fairly fast). They then sit you in a waiting room for an hour (well spaced out so the patients don’t set up some sort of exponential build up of radioactivity bouncing off each other). Then once fully charged one lies on a bed that goes through a tube for a bit and then you are sent on your merry way and told not to hug any chidren, puppies or pregnant ladies for a few hours.

By the time I’d wandered down to find Jane in the hospital food court and eaten some Burger King fodder (which just feels perverted in a hospital) I was feeling knackered and needed a lie down..or three.

Jane went to London to have a discussion with some feminist types on the radio and the boy and I had a very laid back evening distributing lego accross his bedroom floor.

Today… we were up early as its choir practise on Tuesday mornings before school. I dropped the boy off (little knowing there was no choir practice this week and he’d have to spend forty minutes in the library with all the other children whose parents can’t read e-mails) and took the dog for a walk. He couldn’t believe his luck as its possibly the first walk in  several weeks. He made friends with a beagle, got very muddy and I suspect found some fox shit as theres a queer smell in the dining room tonight and if its not him it’s me…so I’m counting on it being him.

Then home, did some washing, some tidying…. went to hospital to have some blood taken and see the consultant… came home…visited the hairdressers accross the road for a catch up… had lunch…. did more washing… made supper (lamb shoulder, butternut squash, carrots and roast potatoes), walked to school and picked the boy up… ate supper… took boy to cubs even though he wasn’t feeling totally well, picked Jane up from town….

A normal day…. and it felt brilliant to be doing it all.

I suspect I’m going to have another good day tomorrow before chemo again on Thursday…. I’ve got a list of things to do building already.

 

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.

 

 

IT chemo and are my Northern roots showing? January 10, 2013

Filed under: cancer,thinks — eclectic chicken @ 7:18 pm
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Back to hospital today to discover that without a morphine buffer IT chemo is quite an unpleasant procedure… still only two more to go.

Intrathecal chemotherapy is an intra lumbar injection, which in my case is a preventative measure (as the usual IV chemo doesn’t make the leap over to the nervous system, so should my cancer come back there would be a chance of it occuring there and , there is a far nastier place to have it than wrapped around my colon as it is now).

Anyway…. very unpleasant as although the local anaesthetic numbs the fleshy outer, you can still feel the needle in your spine…yuck.

This time I took much longer to graduate to sitting upright and had the added help of a saline drip to hopefully fend off the post lumbar puncture headache that last cycle had me headachey, vomiting, dehydrated and hospitalised before Christmas.

I’m also drinking flat coca-cola (the only way I can palate the blasted awful stuff) as its sugary, caffeine high is just the stuff to stave off a plp headache.

In my hours of lying flat (failing to drink tea through a straw, but managing to eat a prawn sandwich and some bourbon biscuits – thanks peristalsis. Ive been reading Stuart Marconie’s ‘Pies and Prejudice’…. nothing to do with cancer but a jolly good read, especially if you are from ‘the North’ (which marconie thinks begins at Crewe… and when I lived in Nottingham I always thought began north of the Trent)… its a well informed amble and ramble and gave me a real craving to eat a babies head for my supper (or to slip back to my roots – my tea).

{like Marconie I was bemused when my upper middle class future in laws invited me first for supper – cocoa and a biscuit? How odd and outré!}

A babies head for those not in the know is a steak pudding….a Northern delicacy… (the lack of which in Nottingham chip shops probably places it back in the Midlands) or soggy steamed suet pastry and mince (slice off the top and dip your chips in).

The nice man in Morrisons, Peterborough obviously had no clue whatever what I was on about and Meg and me plumped for a bit of belly pork instead (as the tinned Goblin puds we found without his help looked awful and had onion in – which I suspect all steak puddings might).

I’m starting a list of things to do when I get better…. see the pyramids?…. Pompeii?….Machu Picchu?… nah…  a trip to Bury market for some decent black pudding and maybe a babies head at a decent chippy.

 

 
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