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!
Thursday, June 12, 2008
Monday, June 09, 2008
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 ...
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.
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 ...
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.
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.
Thursday, June 05, 2008
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.
Details here!
I am so pleased for her .... and have a great big grin all across my face this morning.
Tuesday, June 03, 2008
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!
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!
Sunday, June 01, 2008
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
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
Tuesday, May 27, 2008
15 minutes of fame
We are in the local paper tonight:
Fame at last
http://preview.tinyurl.com/59z83d
It would be nice if a few people we know went over to comment on the story!
Fame at last
http://preview.tinyurl.com/59z83d
It would be nice if a few people we know went over to comment on the story!
Sunday, May 25, 2008
Friday, May 23, 2008
Tuesday, May 13, 2008
busy
oooh, I've been so busy -- I did a bitof voluntary work at B's school this week. Only 4 hours in the classroom, but I had to spend a good while preparing the text and resources, so it kept me off the streets.
We've also been having a new landscape project done in the back-garden, which is nearly finished: photos SOON
My mate mand got married this weekend. It was a really lovely do. The service was in the Town Hall in Manchester, a very fine building with lovely high ceilings and long stained glass windows. Sadly I cant find any sites with good pics of the interior, but you can follow the link for a few images.
Mand and Pete had written their own vows as well, which was good. Then we all had a short stroll across town to the Dukes 92 ~ a bar-restaurant by the canal, where we had a lovely "sunday lunch". The room they had is virtually all glass on two sides, with great views out over the canla basin, creating a marvellous sense of space inside.
Mand looked marvellous and I am so happy for her. She is so delighted with her new life... I did a "best-woman" speech that went down well, no doubt thanks to my impeccable planning! haha
Sadly I don't think I got any decent photos of us together, but I will download later and have a look!
We've also been having a new landscape project done in the back-garden, which is nearly finished: photos SOON
My mate mand got married this weekend. It was a really lovely do. The service was in the Town Hall in Manchester, a very fine building with lovely high ceilings and long stained glass windows. Sadly I cant find any sites with good pics of the interior, but you can follow the link for a few images.
Mand and Pete had written their own vows as well, which was good. Then we all had a short stroll across town to the Dukes 92 ~ a bar-restaurant by the canal, where we had a lovely "sunday lunch". The room they had is virtually all glass on two sides, with great views out over the canla basin, creating a marvellous sense of space inside.
Mand looked marvellous and I am so happy for her. She is so delighted with her new life... I did a "best-woman" speech that went down well, no doubt thanks to my impeccable planning! haha
Sadly I don't think I got any decent photos of us together, but I will download later and have a look!
Sunday, May 04, 2008
we are going up, I say, we are going up
Yay ..
Oh when the REDS, oh when the REDS oh when the RED go marching in
I wanna be in the number, when the REDS go marching in!
I am so pleased for the team, the fans, and everyone who cares about my city!
YAY!
btw- here's another version of Pottermouth, with better sound quality and pictures to illustrate the "cultural" references! -- cos the BBC themselves have presented it
great stuff!
http://www.youtube.com/watch?v=nmsRwj6Iu04&feature=related
Thursday, May 01, 2008
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