Come Dine with Me

I love that programme (perhaps a bit sad to say?)

I think I'd be a natural for it, friendly enough and enjoy cooking and eating!

I also reckon I'd be good for the comedy element .. take this Friday Night, for example, from which I have learnt these two tips which I offer to you too:

However lovely your recipe, and however keen you are to get to the table, when you've cooked it

1. make sure you turn all gas jets fully off ..

and

2. if you accidentally leave gas jet slightly on, DO NOT put plastic chopping board on top of it.

If you neglect these two bits of advice you will find yourself with a kitchen fire and two fire-engines outside for the evening ..


I kid you not, this is what happened to me on Friday evening.

I have spent the day dealing with insurance ppl, though hats off to them, the Co-Op and LV have been great so far!

Stepper

I recently put a new battery in my stepper as part of my "Keep Moving" campaign and went around the lake at Trentham yestersday. I was amazed to find this "proper"walk only clocked up about 5,000 steps, and strolling to Bourne Sports and around Sainsburys in Stoke ratcheted up 3,000. Quite a surprise that these were so close.

I am going to log my daily steps as a way of keeping an eye on my campaign. If you are interested in this anorak-y stuff I am going to use the fitness blog as my notebook for my stats ... http://suzeblogfitness.blogspot.com/

I've done two little bike rides this week and should get another one in this weekend with Brigid, but whatever you do on a bike doesn't really record on a stepper.

Today we are awaiting the arrival of B's mum and David. They've been in the Lake District, just outside the worst of the flood areas.

Phew

Good news all round. I feel better now. Vesuvius rumblings from belly have subsided and I don't feel too sick any more.

Even better: Dr Adab's ideas on the timings of the treatment were laughed out of court by the nurses, who have planned three week gaps so that hospital and patients alike can get a break over Christmas. This is great, means next chemo will be starting on 15th Dec, then off until the 5th Jan.

Even better better: I've been able to do walking or cycling most days, and am optimistic of sustaining my drive to keep moving more through this lot of treatment. The new regime hasn't made me feel any worse than the old one did ... well better, in fact, since the sore hands and feet scenario it taken out (Vesuvius belly isn't as bad as a trade-off!)

My ride today included bobbing into the college car-park to collect my bike lock. Tho I am too scared of germs to risk going in, there are always a few chaps loitering in the car-park to banter with ... :) guess who I saw?

First chemo

Bleugh.

Oh well, it could be worse, it's nice not having the oxyliplatin, and only having to stay in for two nights.

It's also nice coming home!

Still feeling a bit queasy, tho the anti-nausea tablets do keep it down quite well. I'm a bit tired too, tho managed to get some proper sleep last night, for the first time in over a week, so that helps.

This week I've had visits from Andy, Sam, Mandy, Huw, James, Keith, B's mum, David Stretch. Gosh, that's a lot of visitors ... and I enjoy the distraction.

Llandudno Treat

I have tried, several times, to line up these picures with their captions, but Blogger is beyond control sometimes, and determined to move them about.

Perhaps you'll have to imagine this as a puzzle and play "match the caption" if it scrambles them all AGAIN ...

This shows off my new dressing gown and the pyjama top you can just about see:

and the lovely breakfast that come on a tray

and the view down the prom from our window

The size of the suite is more obvious from this angle, with sleepy B on her sofa .

We had some good sunshine on Sunday:

Artistic view of the Grand Hotel .. worth clicking to see it full size.

Hospital Glamour

Went shopping at M n S last week to treat myself to some new pyjamas and a dressing gown. The ones I wore last time are pretty tired and also I'm three sizes smaller, so I would have needed new stuff anyway. I reckon a new bit of luxury will make the fortnightly stays in hospital a little more bearable, so I set off to the shops, giving Primark a wide berth.

It was a good time to go shopping, cos (if you hadn't noticed) it is nearly Christmas and they have got lots more stuff in. I chose some luscious soft stuff in their Autograph range ... warm mink and aubergine colours which I really like.

When I got to the till I thought I'd offer up the gift voucher that people from work had sent me, which was supposed to buy me a few flowers (I'd been told!) In fact there was enough money to pay for the lot. I must admit my eyes filled with tears .. I hadn't any idea there was such a generous gift in the envelope.

I hope they don't mind I didn't spend it on flowers, and it feels very sweet that everytime I'm in hospital I'll have this glamourous gear with me as a reminder of the kindness of the people I work with.

Weekend plans

Brigid and I are going to have a couple of days by the sea this weekend .. to my favourite: Llandudno ... and our favourite hotel there Osborne House.

We stayed there before for my 50th birthday, and we like it cos the rooms are HUGE, well suites really with lots of antiques to give it a proper "country-house" feel. The room we're having has a bay on the front which allows you to look out down the length of the promenade, and is very close to the pier for a littel stroll out ... even if it is raining.

In fact, to ensure walking in all weathers we have bought ski pants, so there is no excuse, we have warm trousers that are both wind and waterproof ! Yay!

I've had my flu jab and will get my swine flu jab later on in the week next week.

Surgeon

Went to see Mrs Hall this week .. she told me about the histology again. 11 or 12 lypmh nodes were taken out and they are all clear, so she was REALLY pleased about it ..

I guess this level of pleased-ness is all very relative, since the whole situation isn't making me feel too great, but on the sliding-scale of things she was expecting to find at this point it's clear she is taking an up-beat view! In short - it could hav been much worse!

New Car

We toddled up to Wigan this weekend and came home in my "new" car. Of course it isn't literally new, but it is only four years old, and looks very new inside! It is a Honda Civic, three door version and with an automatic gear box. It is a metallic blue colour that we can live with!

The best thing about it is that the number plate is only one digit different to B's car number plate. Weird but true -- looks like we got matching plates only without spending any money on it!

Forward Planning

The good news is the histology was back after the surgery and Mrs Hall has got it all out .. clean margins .. always good news. Also good is that they found nothing in the lymph glands ... and nothing in the lumps she thought they were suspicious in my old scar. Three goods!

Dr Adab can't see the point in a PET scan, cos the treatment ... chemotherapy ... would be the whatever any other scan showed. I need more chemo now, because there has been a substantial new growth on my bowel.

The hope is to contain the lesions on my lungs and stamp on anything else that was thinking of growing. He'll review progress with another scan in three months.

I asked him if this was my outlook for the rest of my life, and he said not every other week for the rest of my life, there will be breaks in the treatment, but yes, I can expect regular burst of chemo to contain the metastasis in the future.

The new regime is going to be slighly different. Still 5FU and avastin, but NOT oxaliplatin this time (the one that gives the peripheral neuropathy side effect). This time I'll be getting irinotecan - side effects: chronic gut pain, diarrhoea and if that wasn't enough - you get hair loss with this one too .. hey ho! Actually you can read the whole bloody page on some of these chemo drugs without spotting the bit that tells you what GOOD they're doing you ... I assume they're killing cancer cells ino the bargain.

The only redeeming feature to this is that I will be inside for two nights instead of three this time, and he wants us to carry on living our lives as normally as possible.


Right then.

Oncologist update

I will be seeing Dr Adab this evening. Had a fairly restless night, not consciously thinking about it, but no doubt it was lurking in my mind.



It was in Brigid's subconscious mind, for sure. She had a very vivid dream where someone was breaking into our house and she went down to send them away. Which she did, and then she ran after them to get the keys back. Which they gave to her. The house was full of obstacles, but she was successful in her mission to keep us safe.



She sees this as symbolic of us trying to get rid of the intrusion of cancer into our lives. In dreams your house often seems to represent your feelings about what is closest to you, or your own soul.



It also reminds us of that time when she really did race after a guy who had sneakily stolen her handbag off the back of her chair when we were having a picnic in Park Guell (Barcelona), She somehow knew it was him in the crowds and ran about 80 metres to catch him. She made him give get her bag out of the bag he was carrying and got it back from him. Crazy woman!



This is exactly where we were sitting when it happened:

National Trust Fans

Had a good day out at Sudbury Hall with Mark, Tracy and Luke. We found the pub in the village there suited us, The Vernon Arms, which was just the ticket for decent portions of good pub food at reasonable prices. The last time we went to Sudbury we turned the wrong way out of the car-park and ended up having our worst pub-lunch experience ... so we were nervous!)

After lunch the sun shone enough or us to walk around down to the lake at the Hall and through massive flocks of swans and various geese / duck types of birds (see I'm not taking up a new career as a twitcher!)

We had a good dayout. I am also recommending the coffee at the Hall cafe where we enjoyed a giant cafetiere and shared out Tracy's Thorntons mint chocs, hey ho to the diet resolution ... a great complement to the fish and chips I ate in the pub.

I thought I'd post these photos from an earlier jaunt out to Cougthton Court, we've been to a few National Trust places together this year, and sometimes we have a camera with us. This was just at the end of the summer hols.

1/2 term

Have had a mixed week - pain and discomfort seemed to get worse for a bit, but that seems to have passed now. It's been lovely to have B around, and she has looked after me really well. We've done a fair bit of walking round Trentham and we're making progress on getting my car repaired so we can trade it in and get me my "new" car next week.

B's sister was here at the weekend and we are seeing my brother and family on Saturday. I'm hoping to do some walking with them.

Still no word on the future treatment options. I've been trying to sort out flu jabs and swine flu jabs to get some protection for the future.

one week out of hospital

It's been a busy week, cos in between lazing around and watching TV I've had lots of visitors.

It was helpful to have mum and dad around during the week so B could continue to go to work and know that someone was taking care of me. We also saw my Aunty Barbara and Uncle Cliff during the week plus my bother came up last weekend and B's sister was here yesterday.

Various pals have also popped in to brighten my days, and that has been lovely.

I still feel as though a horse kicked my belly when I walk around much, but I've tried to get out and have been to Trentham three times - it really is a tonic, with the wide open spaces and ancient trees.

It's 1/2 term this week, so the lady wife will be fussing me and making sure I keep moving as well.

No news yet about when I might see Dr Adab to get news of the treatment plan.

Memories

Getting up Mont Ventoux.

This was a challenge I set myself at some point last winter and I kept to a pretty strict diet and trained for hillclimbing so that I would be able to do this iconic climb this year.

Since my last operation (June 2008) I lost five stone! I climbed hills in the Peak District through the winter 2008-9, and did soem good distances in Scotland at Easter and Ireland in June with my eye on doing serious climbs this summer. I did this Mont Ventoux climb in August 2009.

I went 10 miles up it on the day the Tour went past and a few days later did the whole thing, that's about a mile up in the air (1912 metres above sea level) It is 16.5 miles of cycling uphill, with NO downs and no flat ridges. It took me a little over 2 hours 30 minutes. You cannot imagine how great that felt. There are lots of other cyclists there, but very few of them are women, or my age, or my size … even though I lost a lot of weight I’m still big for a cyclist … so it was a good feeling to be strong enough to do it, and pay a tribute to the good job my doctors did on getting me better!

It's a sad to realise that even as I did this the cancer was already growing again. I do so hope they can patch me up again.

My next goal is to do some climbs in the Pyrenees next summer. I've seen the Tour De France schedule for next year and the final week is in the Pyrenees with a Time Trial at Bordeaux. This is near where our good friends Lili and Bouclette live, so I am hoping to spend the first week of our holidays with them, see the Tour and do some Pyreneean climbs myself .... great plan eh!

This is the professional photo, if you click on it you get the large version.

One week post op

I feel very well, considering. The pain is not a fraction of what I had to deal with after my first abdominal surgery, and I feel pretty good. Of course, last time was a much bigger op, deeper into my body and needing a stoma creation as well. Plus I'd been battered by radiation and chemo in the preceding weeks, so altogether lots of reasons for it to be worse then and better now.

Psychologically I am trying not to think what three visible secondaries might mean for me, long term. Spots on both sides of my lungs can only be bad news. I will see Dr Adab as soon as he's had histology results from my bowel tumour. I guess within a couple of week, and then he will be telling me his treatment plan.

I got the impression that chemo was the most likely route, as the spots are small and might go with chemo ..... but there was a passing mention of the option to deal with them surgically ... which is tricky with both sides being involved ... but then I am super-fit atm ...

Whatever, they certainly won't entertain surgery if they get a bad answer to the big unanswered question: are these three just the tip of a metastasizing mountain of mini-tumours seeded all about my abdomen? I'll probably have a PET scan to tell them that.

http://www.macmillan.org.uk/Cancerinformation/QAs/701.aspx



..

<>

back home

I'm back, abit sore and tired ... obviously.

Dad, this is the BnB you coudl look at

http://www.kenwoodguesthousestoke.co.uk/

plan ahead

I am wishing I was cycling in the sun with you Malc, but will settle for the memories of the summer in france, which was so great

... and the next year's tour schedule came out this week .. they are doing a time trial near our pals in Bordeaux, so that's next year's summer mapped out!

windy wilde!

Good morning!

Suze is up and walking about trying to shift the discomfort in her belly.

Not as bad as last time though and she'll soon be on here herself reading all your comments and posting again. I look forward to hearing all about them later.

I'm off to work now

Enjoy your day

B xxxxx

LATEST NEWS

Hi, Just spoken to Susan she is feeling fine , has seen three Drs' all pleased with the progress
she has had some breakfast and the staff are just geting her out of bed.
Dad.

GOOD NEWS

Hello every one,
Susans op; took 2hrs' she is back on the ward ,and is ok.

Susan spoke to me and said she is feeling 'chipper' and is waiting to have a race with Brigid on her bike .
She has not had a colostomy bag fitted and is very pleased about that.

I spoke to Brigid and she is HAPPY BUNNY.

The doctor had no trouble removing the tumor it whas on the outside of the intestine, near the join with the small intestine ...  only a part of that needed removing .

Susan will be on chemo again for the two small sites on her lungs, and we all hope that treatment
will be as satisfactory as last time .
Good bye to you all for now, and many many thanks for all your kindnesses and best wishes.
DAD XXXX

monday

wow - the sun is shinging! amazing..

I'm all packed up and ready to go, lots of bags, as usual ..
At least I've not had time to get scared about the surgery this time, with only a few days notice.

I also realised that I've been in the recovery room at the hospital four times before, so not only is FIVE an auspicious number, but I can mentally project myself there already and just bypass the bit where I am unconscious and imagine coming around and being cared for by the nurses.

My dad will update this later on this evening, whenever he gets some news from Brigid.
----------------------------------------

I started to re-read this blog last night, but there sure is a lot of it! and that's without reading all the comments.

I love comments, so if you are starting to read again, please don't be shy about adding a few words, just to let me know you're there.

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

lots of love

suze xxxxx

Trial run.

Susan , I am having a go to see if it will work, just a one liner first ,here goes!!.

summer to celebrate

Three years ago, when I first got a cancer diagnosis I was told my tumour was inoperable. But they found a way to shrink the bugger and treated it. Thanks to my medical team we have just had the most marvellous 12 months together, cancer free and very strong.



But I've always known this could happen again. The odds were there from the start. 66% -- as most of you know, these were not good odds. Part of the reason I've worked so hard on my health is so I could be physically strong in the event of secondaries coming back.

Now they are back I am trying to hold onto the wonder of the summer, and here is a photo to remind you all of where we got to: me and my lovely wife on the top of mont ventoux

.. and where I am aiming to be again, next summer:

cobwebs swept off

here we go again, folks

surgery on Monday ....

nearly october

oooh - I can't seem to quite retire this thing!

I just flicked over the calander last week and saw that my annual scan / bloods Dr Adab do-dah is scheduled for 1st and 6th October .. I sort of had it in my head it would be around 1/2 term, and it seems very SOON for it to be here again already ..

It made me a bit mopey for a while ... 66% chance of secondaries in the first two year .. gaaaah ... his voice still echoes in my head with that scuzzy statistic .. and yes yes, I know it's only a statistic . .. I remember the lampost analogy as well .. but this is the two year check

gaaaaah ..

Anyway .. can you believe it, two years since the chemo finished? And they have been a very good two years. I've loved going back to work part-time and I am mentally strong and physically as fit as I've ever been.

To have faith in the future we've started looking ahead to our Christmas holiday -- thinking we'll do something like last year, jet off to some sunshine and more cycling .. yay!

And if my general state of health has any relation to my innards, I am fine, really fine .. thoroughly enjoying life, really enjoying being fit and geting great pleasure from zipping about on my new bike.

:)

one more thing to celebrate

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

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.

clear

clear scan, one year from the end of treatment.
clear blood results, one year from the end of treatment

clearly good news

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

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

Pleased with myself

I am -- see fitness blog for the reason why!

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?

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!

sunny times

around the hotel

still life

wildlife

holiday town

Holiday Snaps - at last

me n the missis soaking up the sun:

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!

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.

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

monkey world

dont forget, if you click on the picture you get a bigger version.

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.

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!

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

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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