Yup - my innards are clear, no sign of any new polyps growing so my surgeon has announced that she doesn't need to see me now for FIVE YEARS! I take this to be very good news.
So on that up-beat note, I extend a massive thanks to everyone who has read the blog, and especially to the regular contributors to the comments section ... It has been great fun keeping in touch via the blog. It's proved a very easy way of telling lots of people who wanted to know what we were up to.
It's also allowed family and friends to keep in touch easily, and the support we've had over the past two years has been amazing. I've also made some great new friends and rekindled relationships with older ones as a direct result of this journey.
We have both really appreciated the support, but we are now both more than happy to sink back into normality ... not withstanding that I will always be Toby's celebrity relative, and Joe's very own Cruella DeVille, can you believe a boy like Joe could call me that?
I know that cancer never really goes away, or at least the fear of it never does, and it could still come back and bite me hard .. but while it is in remission and looking clear set for a while, it is no longer important to me, and I want to stop thinking about it
I think I might keep the fitness and spiritual ones ticking over, in a 1/2 baked way, simply cos the fitness one serves as a reminder to me of recipes and stuff that I want to remember .. and being spiritual is always important. But for the most part, what is in this blog is stuff I really want to forget now. Forget and leave behind in its own time and space.
It was weird going back to theatre today .. it certainly did remind me that the last time I did that journey for a colonoscopy I got told the news about my tumour. I felt sick, and apprehensive all over again, but this time there was no need. We don't need reminding of that fear and apprehension anymore.
Bye bye bloggers and thanks a million.
xxxxx
xxxxx
xxxxx
xxxxx
xxxxx
a commonplace thing - living with cancer - one in three of us in the UK will get cancer in their life .. take heart!
Monday, November 03, 2008
Sunday, November 02, 2008
One more test
Today I am doing that de-tox thing .. no food and extra laxatives ..
I am trying to persuade myself it is a good boost to the weight loss diet after 1/2 term of over-eating! We had a lovely time in Lyme ... the weather was cold, of course, but some nice bright mornings and not too much rain so we got in some walks along the seaside. Great. Our flat had a lovely view over The Cobb too, which we appreciated very much.
I am hoping tomorrow's tests are just routine, and then back to work and more normal life... I think this really is the time to retire this blog ... assuming all is well tomorrow I am ready to retire it now. Normal life doesn't need a regular update.
I am trying to persuade myself it is a good boost to the weight loss diet after 1/2 term of over-eating! We had a lovely time in Lyme ... the weather was cold, of course, but some nice bright mornings and not too much rain so we got in some walks along the seaside. Great. Our flat had a lovely view over The Cobb too, which we appreciated very much.
I am hoping tomorrow's tests are just routine, and then back to work and more normal life... I think this really is the time to retire this blog ... assuming all is well tomorrow I am ready to retire it now. Normal life doesn't need a regular update.
Wednesday, October 15, 2008
clear
clear scan, one year from the end of treatment.
clear blood results, one year from the end of treatment
clearly good news
clear blood results, one year from the end of treatment
clearly good news
Sunday, October 05, 2008
comedy moments - football
Go see this on Youtube, it got a mention in today's paper ... the best free kick, ever, from Coventry in 1970.
http://uk.youtube.com/watch?v=Wjq2xT-tx38&feature=related
http://uk.youtube.com/watch?v=Wjq2xT-tx38&feature=related
Friday, October 03, 2008
live your life
"live your life" (regulars will recognise that as my oncologist's favourite mantra ...)
I'll be seeing him later this month, and I think you also know that I'm dreading the scan next week, basically fearing the loss of the life I've only just got back,
SO I am really tring to hold onto the notion that we (ALL) only live one second at a time .. and we have to make every effort to just enjoy what we are doing, whatever it is ..
Following this train of thought, I took my eternity ring into the jewellers for re-sizing yesterday. She was really reluctant to do it cos I am still losing weight, and it will need to be done again ..
Well the ring is literally cutting my finger, being so loose and BIG and heavy as it swings about, it actually isn't fun to wear it ... so, I either can't wear it or I can get it fixed .. why put the ring in a box? Why not do what I can to enjoy it now? especially since B bought if for me after my diagnosis ...
The jeweller really didn't understand but I reckon this is a typical cancer patient's way of thinking, isn't it? ... she was thinking it was a waste of money, no doubt, and I could get it done when I've reached my target weight .. haha
Saturday, September 27, 2008
Monday, September 22, 2008
Complacent
Two of my internet pals, women whom I've met through sharing an experience of bowel cancer, have been in touch to tell me that they are ill again. It's chilling news, and underlines the fear that stops me feeling complacent about my current good fortune.
I seem to be in a constant sort of double-think. e.g. I was just prepping some stuff for my students, and thinking about how I am going to set our a tight schedule and keep them on target etc .. and yet underneath that optimistic planning is the thought: "If that scan in OK ..."
And we fancy a sunny break at Christmas, but we can't book that yet. It will the top of my things to do list as soon as I get an all-clear in October! Or should I wait for my colonscopy in November?
I seem to be in a constant sort of double-think. e.g. I was just prepping some stuff for my students, and thinking about how I am going to set our a tight schedule and keep them on target etc .. and yet underneath that optimistic planning is the thought: "If that scan in OK ..."
And we fancy a sunny break at Christmas, but we can't book that yet. It will the top of my things to do list as soon as I get an all-clear in October! Or should I wait for my colonscopy in November?
Thursday, September 18, 2008
Back to work, proper-like
I am really enjoying my new timetable. It's enough to do for me, and it's engaging, without taking over my whole life 24/7 like it used to. I'm loving the opportunity to be back there, and the team is HUGE now, with MEN!! What's the world coming to, eh?
I guess the pleasure I'm getting from being back is making me feel more apprehensive than I have before about the tests and scans I need to have next month. I now have a really strong feelng that I DON'T want to lose this comfort again ..where as when I was IN treatment, there was more a sense of resignation, that that was what I was used to, my norm, I guess.
I've achieved my main objective today, which was to get Dr A's agreement that I need a CT scan next month ..well he doesn't "agree" that I need it -- with his magical x-ray eyes he knows it will be alright .. but to set my mind at rest he is going to order a scan for me ... a date with Huw. This might seem contradictory, to what I wrote above ... but Dr A's opinion twelvemonths ago, that there was a "high risk of secondaries in the first year after treatment" is still not far from my thoughts. I want the re-assurance of a proper look He was planning bloods alone, and I didn't think that was going to calm me down .. my cancer never particularly showed in my blood in the first place! Having got the CT scan pencilled in makes me feel calmer, for now at least!
I guess the pleasure I'm getting from being back is making me feel more apprehensive than I have before about the tests and scans I need to have next month. I now have a really strong feelng that I DON'T want to lose this comfort again ..where as when I was IN treatment, there was more a sense of resignation, that that was what I was used to, my norm, I guess.
I've achieved my main objective today, which was to get Dr A's agreement that I need a CT scan next month ..well he doesn't "agree" that I need it -- with his magical x-ray eyes he knows it will be alright .. but to set my mind at rest he is going to order a scan for me ... a date with Huw. This might seem contradictory, to what I wrote above ... but Dr A's opinion twelvemonths ago, that there was a "high risk of secondaries in the first year after treatment" is still not far from my thoughts. I want the re-assurance of a proper look He was planning bloods alone, and I didn't think that was going to calm me down .. my cancer never particularly showed in my blood in the first place! Having got the CT scan pencilled in makes me feel calmer, for now at least!
Tuesday, September 02, 2008
Sunday, August 24, 2008
Super Saturday
We are in London. Went to see Charlton play. B's dad got me the ticket for my birthday pressie ... it was a great seat and a great game. Very exciting, three highly dubious penalty decisions, a total of 6 goals and a sending off!
I was pleased to see Stoke open their winning account with a good game against Villa -- c'mon you reds!
I was pleased to see Stoke open their winning account with a good game against Villa -- c'mon you reds!
Sunday, August 10, 2008
holiday time
Long time, no see in here! Most readers will probably know that B and I skipped off for a couple of weeks in the sun, recently. Hence no posting! We went to a small island next to Rovinj in Croatia. We had the most marvellous relaxing time with lots of variety of activity including a trip to Venice for a few hours!
I will put photos up as soon as I get them edited, which seems to be taking me a while. I have 230 to work on, so be warned! Meanwhile you could look at This hotel, which is where we stayed. These seven photos of Rovinj, will give you an idea. Or this longer selection is good too.
I think I was pretty brave, taking a trip so few weeks after my last op, but it all went pretty well. A few dreary extended toilet dramas, but generally it was fine, we ate well, exercised a bit each day and came back no heavier than when we set off.
I feel as though I've got my body back form cancer now. Very liberating.
I will put photos up as soon as I get them edited, which seems to be taking me a while. I have 230 to work on, so be warned! Meanwhile you could look at This hotel, which is where we stayed. These seven photos of Rovinj, will give you an idea. Or this longer selection is good too.
I think I was pretty brave, taking a trip so few weeks after my last op, but it all went pretty well. A few dreary extended toilet dramas, but generally it was fine, we ate well, exercised a bit each day and came back no heavier than when we set off.
I feel as though I've got my body back form cancer now. Very liberating.
Sunday, July 13, 2008
monkey bizness
I have tried to upload my latest groovy monkey pictures a few times recently .. finally got the first lot to show -- below -- there are a set of pics of the baby that is only a couple of weeks old to post as well. I will try to do them later in the week.
In the meantime - you might like to check out my latest entry on my fitness blog .. it is a bit of a rant!
hehe
http://suzeblogfitness.blogspot.com/
xxxxx
In the meantime - you might like to check out my latest entry on my fitness blog .. it is a bit of a rant!
hehe
http://suzeblogfitness.blogspot.com/
xxxxx
Thursday, July 10, 2008
Tuesday, July 08, 2008
Liverpool
Have passport, will travel. YAY!
Spent the day in Liverpool today, waiting for my new passport so I can go away in 2 weeks time! ( Check out my "take heart" blog for the way that struck me.)
Liverpool looks very "glamorous" in the city centre these days, and the lambananas all over the place added a smile to the whole enterprise.
I had been very nervy about driving into the city and finding the Passport Office, etc for a 9.30 a.m. appointment, but I managed it. I got up at 5.30 to give myself plenty of time in the morning, and only had four public-loo calls while I was out .. not too bad at all! It was a good chance to test the theory that I CAN travel and I was pleased with it.
We're also sticking well to the eating plan. Baked trout for tea, baked Greek-style with onion and tomatoes and herbs, with aspargasus and broccoli on the side .. lovely!
I am totally whacked out now - fell asleep in the chair for ages this evening.
Spent the day in Liverpool today, waiting for my new passport so I can go away in 2 weeks time! ( Check out my "take heart" blog for the way that struck me.)
Liverpool looks very "glamorous" in the city centre these days, and the lambananas all over the place added a smile to the whole enterprise.
I had been very nervy about driving into the city and finding the Passport Office, etc for a 9.30 a.m. appointment, but I managed it. I got up at 5.30 to give myself plenty of time in the morning, and only had four public-loo calls while I was out .. not too bad at all! It was a good chance to test the theory that I CAN travel and I was pleased with it.
We're also sticking well to the eating plan. Baked trout for tea, baked Greek-style with onion and tomatoes and herbs, with aspargasus and broccoli on the side .. lovely!
I am totally whacked out now - fell asleep in the chair for ages this evening.
Sunday, July 06, 2008
By popular demand
Good Morning, Margaret, 'ey up Ali, and a general big hello to anyone else at college who still bobs into the blog ...
Actually, things are already massively better --- I have been able to control myself much better already and I started to go into work lasts week. I have done loads with Stewart towards polishing up our act for the new term, new syllabus .. which was great ..
I'm still officially "off-sick" but have worked a lot at home and bobbed into college three times. It feels better than having a huge gap to Sept. By then it will have been two whole years faffing about with this disease .. I got my diagnosis at the beginnning of Sept 2006. Hopefully this is the end of it.
I can't quite believe it, but on the basis that I can now generally manage a few hours away from a quick loo call I've booked us a two week holiday in Croatia -- WOOOOH!!!
it looks like a nice sunny place where we can really stop, and enjoy relaxing and getting strong again.
Towards getting strong, I am eating the Super Foods diet plan for a healthy digestive system ... it is a challenge of massive amounts of chopping and raw veg and salads, but it seems to be working really well, and I feel great on it -- plus there is some sign of the three stone I've put on in two years actually shifting a bit .. which always feels good ...
P.S. -- one of my mates said yesterday that I am the fattest cancer patient she's ever seen! She's got a point!
Actually, things are already massively better --- I have been able to control myself much better already and I started to go into work lasts week. I have done loads with Stewart towards polishing up our act for the new term, new syllabus .. which was great ..
I'm still officially "off-sick" but have worked a lot at home and bobbed into college three times. It feels better than having a huge gap to Sept. By then it will have been two whole years faffing about with this disease .. I got my diagnosis at the beginnning of Sept 2006. Hopefully this is the end of it.
I can't quite believe it, but on the basis that I can now generally manage a few hours away from a quick loo call I've booked us a two week holiday in Croatia -- WOOOOH!!!
it looks like a nice sunny place where we can really stop, and enjoy relaxing and getting strong again.
Towards getting strong, I am eating the Super Foods diet plan for a healthy digestive system ... it is a challenge of massive amounts of chopping and raw veg and salads, but it seems to be working really well, and I feel great on it -- plus there is some sign of the three stone I've put on in two years actually shifting a bit .. which always feels good ...
P.S. -- one of my mates said yesterday that I am the fattest cancer patient she's ever seen! She's got a point!
Thursday, June 26, 2008
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 ...
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
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 ...
Thursday, June 19, 2008
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
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
Tuesday, June 17, 2008
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'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
-------------------------------------
Thursday, June 12, 2008
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!
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!
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
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