As predicted

This is proving pretty dull .. tho at least I have got over the fear that I will always be house-bound by my erratic new-bowel function .... it is a lot less painful already and the sense of urgency is, well, less "urgent" now .... adn I think I will be able to manage life outside these four walls again at some point ...

But it is far from "normal". I am still going to the loo about 14 times a day .. and there haven't been two days the same so far ... sometimes the loo-run is concentrated into a spell of two or three hours, sometimes it is spread out at hourly intervals ...

sometimes I'm trapped in there in the morning, sometimes in the afternoon and sometimes in the night sometimes I go quite a while with no action ...

Still not even a month on from the op, and it IS a great relief that I do feel as though I've got a bit of control ever it ... but yup, it is DULL!

We can't plan anything much yet .. which is a torment with the summer just around the corner - but travel is still an impossibilty with things the way they are just yet ...

Legitimate theft.

Here's another joke -- though far from funny

Actually I am hopping mad today reading about those Tory MPS ~~ Mr and Mrs Winterton (who used to be my MPs when I lived Cheshire way) --> and they are getting away with a "legitimate" swindle of 130,000 quid on their "allowances" .. which just makes me squeal with indignation .

While out here in the real world the Job Centre Plus is referring my overpayment of benefits to "debt managment" for the mighty sum of 300 quid .. and when the overpayment is cleared my incapacity benefit is going to be a whopping 84 quid a week .. ooh, how would the Wintertons mange their personal budget on that, I wonder?

I cant, really, find the words to express my hatred and contempt for all the MPs who cheerfully exploit the MP's allowances system, and that pretty posing pair, in particular, make me heave ....

http://www.guardian.co.uk/politics/2008/jun/19/conservatives.houseofcommons

dreary droney days

hmmmmpph

I'm already bored of toilet training, even though the prognosis was always "it takes months not days to establish a managable pattern (..............if you ever actually do)" ... Even though I was warned about it, actually living it? yup, it is ~ ~ TOUGH ~ ~

I feel pretty captive and as though my life is in a limbo .. and I dread the idea that my quality of life might carry on like this, which is really just worse than at any other point in the last couple of years of symptoms and then treatment!

PLUS The weather aint very great so I can't really benefit much from the garden ..

PLUJS I can't see what there is going to be to post about for a while .. this sort of captive thing is going to be a bit repetitious ..




Does anyone know any jokes?



Actually: here's a relevant / topical one from today's letters page in the Grauniad:

I always thought an innuendo was an Italian suppository

-------------------------------------

Toilet Towers

OK, don't worry -- I'm not going to record every detail of this process, suffice to say that it is not very easy, and I am already bored of it!

It was better at the start of the week, when the sun was shining and I could at least sit out in between the toilet-treks... now it's less attractive, though I did manage an hour at Trentham after I went to get my stitches removed, which was good.

Sometimes there are quite long periods of internal inactivity .. the problem is the bursts of activity are unpredictable and last for two or more hours .... which is the fact that keeps me close to home and fearful even when I am out.

What's good is that when it's OK it feels pretty OK - my tummy isn't too sore after the op and my general health is pretty good ... in particular I am much less weary than when I was house-bound with the chemo for most of last year .. but then I'm not actually making any demands on my body or brain yet!

Hospital Diary

Monday 2nd June

In, down, and out (that's me)
Out, stitched, and in. (that's the stoma)

After the op I was woozy with the wretched morphine drip .. it doesn't suit me very well, but otherwise .. GREAT. Mrs Hall says it was "easy" .. I was in theatre for less than an hour and the hernia mended to boot. No drain, no catheter and out of bed onto my feet 2 hours after I got back to my room. (This, on account of having spilt a beaker of water in the bed and the easiest way to change the sheets was to get me off them .. !!)

They had me on regular obs and oxygen for about 36 hours, but nothing to worry about. Blood pressure and SATs went quite low, but blood tests showed all functions normal and no anaemia.

Tuesday 3rd June
Allowed to eat "little and often". A bit apprehensive cos yesterday's water mostly got puked back up, on account of how windy you get with abdominal surgery .. but it takes a lot to stop me eating ..so ...

• weetabix for brekkie
• soup for lunch
• mash n gravy for tea ...

It all stayed down and by the afternoon I was using the restored plumbing, clearly my peristalsis kicked in straight away ... tho my surgeon reckons this is "OLD" stuff not the just eaten stuff!

Mrs Hall told me months ago that this operation would be "a walk in the park" compared to the first one, it seems she is right - just 24 hours after the operation and I generally feel fine, am not in too much pain and can move about pretty well already.

Wednesday 3rd June
Still eating but poohing pretty much stopped today. Now I can start to fret about getting constipated! Ate an extra banana and some apple juice!
Slept all night.

Thursday 4th June
Mrs Hall saw me at 6pm and B brought me home at 7pm.
Still a bit anxious about not poohing very much, re-reading all my cancer mates' blogs/forums about their experiences of reversals and exchanging emails with Moley about how to get on with this.
I love the intenet.
I love my stressless chair, too.
Slept all night on my stressless recliner chair - two reasons for not using my own bed yet: I don't like lying flat and I miss the electric back rest in the hospital bed which saves your abdomen a lot of grief ... stresless chairs lift you up and down easily ..

Friday 5th June
Today I was pleased to see that various mates who I've not heard from for a while are still reading in here ..hiya to Erin, Greg, Christine, Venita, Ann, and anyone else who is reading but not commenting.

Saturday 6th June
Not much loo-action yesterday or today, so felt OK to risk going up 'anley duck, to get my new, , varifocal, vavavoom, Valentino sunglasses ... which are a purely practical investment to make my house-bound days in the garden easier!

Sunday 7th June
Hell. This. Is.
Hell.
Nearly 30 trips to the loo in one day is not funny.

This makes me house-bound and this is also very painful. This is what I was warned about. It is urgent and uncontrollable but (thankfully) only painful in short bursts.

My surgeon calls this toilet-training thing an "adjustment" and classifies it as a "medium-term" problem -- i.e. it won't get sorted over-night. She reckons 2 -4 months to feel you're getting some decent control and up to 6 months for a sense of bering settled into a predicatable pattern and routine with it, but today .. ARGH

The pain isn't from broken skin (yet!) it seems to be a choice of pains which signify the "need to go":
... pain like sense of having a pole jammed HARD up my backside,
or
.....a razor twsited round it

This is the "urgency" thing and this is what hurts .. presumably cos it's had 18 months of not being used, and also cos I don't have much bowel left, and no rectum, so my storage facility is compromised. I can either accept this message .. which today I've mostly been choosing to do and go straight to the loo ..

Or I can try to "control" it which hurts even more .. i.e. ignore it and walk around grimacing whimpering and hoping it goes away .. I've had some success with this, but it feels like an addict declining a fix, cos the pain relief from using the loo is quicker than the control training.

It easier to get the quick fix of using the loo but I wont get "better" without learning to decline the quick fix.

Hopefully:
a) my muscles will get used to being used again and will hurt less,
b) I'll get better at controlling it without the distracted pacing about and grimacing, which makes me pretty anti-social just now!


Monday 8th June
One week since the surgery ..
Well - so far do good - only one loo trip today and I've been up 3 hours .. whooo!

Mum and dad are here and they've just gone out on a shopping trip.

Being in Hospital

An interesting thing about being back inside was the way that both the environment and the surgical side of it all seemed related to the first operation ... in particular recalling how bloody painful the first operation was and various other terrible pain memories that all shot back into my head .. which I'd rather not re-live.

I was also repeatedly reminded of the ghastly, echoing, pinging sound of the chemo drips that I used to have punctuating my life for three days at a time. I have totally disengaged myself from those memories now, but being back in there I kept hearing other people's alarms going off and it was **hard** having to remember it all. I felt so unemotional going through it the first time I was surprised to feel churned up by the memories when chemo is no longer on the agenda. It made me wonder how I would be now if the last scan had found something growing and chemo was back in my routine? OK, a fairly pointless musing, but you have to do something in your morphine haze.

I conclude that part of my best defence against cancer seems to be a great ability to forget things really quickly! So don't take it personally if I forget something about YOU - I am busy deleting huge chunks of the last two years and sometimes some decent stuff gets excised too.

Prize Winner

Woo - a big shout of delight to announce that my colleague and friend, Sukhraj Kaur Randhawa , won a literary prize at the Orange Awards in London, last night. She has won the Orange / Harper's Bazaar Short Story Competition 2008 and her story will be printed in the Harper's Bazaar magazine in October.
Details here!

I am so pleased for her .... and have a great big grin all across my face this morning.

inside

whoo - the Nuffield have now got FREE internet access and I am well enough to use it.

Mrs Hall cut me up at lunch time yesterday... and I WAS "EASY" apparently - less than an hour and only 6 stiches on the surface .... it's a bit early to know how easy he rest will be but we're off to a good start.

So far I've only had water inside me and the first few glasses of that came back up the way it went in. I had a cup of hot milk in the night and no sign of that returning so the nausea could have just been due to the morphine ... I'm now taking much less morphine, but still very tired and dozey..

B has popped in to see me this morning but now she is off to work and I am netting for company!

Hospital again!

Hopefully for the last time tomorrow. (Monday 2nd June)

I am quite chilled about it, and have been rooting out dresses and tidying up my bookshelves so that I can be assured of something comfy to wear and easy access to books I want to read when I get home.

I had a look at my x-ray last week, not a thing I usually do, I don't much care to see my innards in any format ... but this time I had a look. I can report that my lower bowel looks like a bit of old rope and the bit where Mrs Hall stapled it together is RIDICULOUSLY SMALL! When I queried her opinion that this was actually big enough to work again, she assured me that it was fine. It didn't look fine to me, so maybe I'll go back to the old formula of not looking at x-rays in the future.

I will also be sparing my readers any close ups of my post-op belly, but anyone who wants to see pictures like that .. you will be able to find them ~ cos a couple of ppl I know who have had this ileostomy reversal have posted their photos!

I should be on-line while I'm inside, and hopefully not too groggy to function after the first day or two. Lots of love

Suze
xxxxx