Oh no I have a cold!

This time last year I had just started a 6 month course of Chemo so I'm hugely grateful that this year I am just getting a cold. Amazed that the various fruit juices (and abundance of 40% spirits) last night didn't knock it on the head. Great game today with The Canaries again saving the best till last. Love that Never Say Die attitude and Fulham didn't deserve to win - how could they when Jol played the 2nd half without a striker?

A year on

Wow, it's a year since my cancer op and Ileostomy. I feel so lucky that the operations went so well, that the bag and chemo were bearable and that the internal JPouch seems no different from a normal colon.

And what a year. This time in 2010 I listened to Norwich battle out a draw with Championship Leeds. Yesterday we just missed a draw with Arsenal. 'Occupational therapy' at Future Radio has been brilliant as has getting Spike, a 3 year old Tibetan Terrier, from the rescue centre.

My other therapy has been writing this blog - it's helped me feel in control of things, has been a great way of keeping in touch (come in Iceland, Ghana, Cambridge, Blackheath, Walthamstow), and rediscovering friends (Lucy, Frances, Betty) and it's been great to get emails from folks going through similar stuff who've found something useful amongst my ramblings. The hits have come from around the world; particularly popular are the stoma Teddy photos.

I'm not quite as assiduous a correspondent these days but I will check in after my next Outpatients appointment with Mr Kapur on 21st December.

Small steps

Been ages since I last blogged - apologies. Partly it's because I've been waiting for things to settle down ... and they just dont! Wine gums are good. Partly also my domestic situation has changed. wine gums (less of the gums) - good. No alarms from a recent scan - I will hear in detail at an appointment in late December. Meanwhile I steer clear of onion rings and bottled ales.

New Kit always On

The problem with the wonderful new bespoke equipment Mr Kapur has made for me is that it shows off - it always wants to be doing stuff. Yesterday in a desperate attempt to have a night's undisturbed sleep, I had a largish lunch and then only small snacks until a post NCFC victory feast of chicken (no fibre) and my old bag settling allies, wine gums. It worked. So a stock of wine gums into the studio tomorrow!

Oats, Corn, hops!

More forbidden fruit - Passionfruit and Pineapple, high fibre - Muesli, Sweetcorn but enough of that worthy stuff. I am watching the football,eating Nuts and drinking Lager. Whoo Hoo! Cheers Mr Kapur!

Tum of Glass

2am Thursday brought searing stomach pain at the rejoin wound. Maybe a blockage as nothing was going south (except wind which was encouraging) Grateful that the feeling of digesting glass shards didn't happen for my Breakfast Show debut, I drove down to see Dad as arranged - the pain kept me alert. A hot bath when I got home and things seemed to start working again. Belly circumference down to 31 inches today. Problem is the ballooning seems to have bruised or cracked my ribs on the right side and now it's subsided I can feel them when I breathe. If it's still a problem on Monday I'll call the GP. Meantime paracetamol and my last day of antibiotics.

Skins

The adrenalin rush of...eating an apple with the skin on, a tomato with pips in, beanshoots. Wow life without a bag is exciting! Nocturnal bathroom visits are no fewer though - not sure how much of that is the antibiotics but oddly daytime activity is not quite as frantic. Tum down an inch to 33.

Co-amoxiclav

The last three letters of the antibiotic tell the story and my nighttimes are very busy. It's doing the job though as belly circumference is down 2 from yesterday to 34inches (thanks for the suggestion Ali although it's a scary thought that this time last week the Tum's girth would have been around 46 inches or more).

Summoned for bloodtests today as my potassium was low when I left hospital and I'll have another on Monday which I'll have to remember after I feature on Future Radio's new Breakfast Team. It's something that kept my head positive while I was in hospital and I was dreading having it set back with more surgery. I'll make sure I take my breakfast Co-amoxiclav after I leave the studio.

Home!

The Senior Registrar was happy to sign me off & I'm sure the ward staff were pleased to see the back of me. Jen & Lu had been stars yet again and the fridge was stocked. Spike seemed to know who I was which was reassuring - I rescued him, had him for 3 weeks then had 10 days in hospital. Now that my tum's gone down a lot I'm surprisingly mobile; the gap where the stoma was has been drawn together with a single purse stitch and the internal wound where the colon was rejoined has been happily tented by my swollen belly which may have helped it heal! So we had a decent walk. Jules came round (I suspect there's a rota to check up on me), then early night. It's going to be fine.

Breaking... News

Ladylike as ever i still have not pumped but my visit to the loo just
now signalled a functioning, wide awake bowel - with wind! Get me
outta here.

--
Sent from my mobile device

Deflation

The antibiotics have reduced my tum from imminent birth size to beer
belly & it's got some give @ last. Water stayed down so had mashed
banana 4 lunch (rather than a small portion of the menued Shpd's Pie,
Cornbeef Hash or Veg Goula
h/Dumplings - a lot of beef & fat 4 sick people?).

--
Sent from my mobile device

Bucket

Joined briefly on the ward last night by a confused but feisty 88 yr old. For much of the night she described detailed routes thru her house in a hunt for arcane items - hearing aid batteries, a bucket in the kitchen, was obsessed about window orientation. In the morning as she sought the kitchen bucket (a commode sufficed) we saw H was blind. As the staff made beds she told great stories of training her 5 Guide Dogs like Whisp who did 'Busy for a Biscuit' in the garden (not in a bucket) before bed.

Amoxycillin & Metrozonidal administered last night via drip. Tum still huge but a bit less gassy. 1st Nurse I saw this morning assumed she was to take the drip away. I think the default nurse care plan was to discharge me and see what happened - would have been nasty. Apart from dodgy sewing, the Senior Reg's mistake was to think too binary. He thought if there was a surgical problem the blood tests would show it. In fact they did but not to the level he expected. The leak from bowel to bloodstream is small but it's there. Mr K wasn't around enough but by wresting me from the knife of the duty surgeon & stenting last year's tumour, he has good credit.

Foul Up

Because drinking seemed to infl8 my stomach, I have resisted the
nurses/junior medics calls to up my liquid intake & come off the drip.
That's why I feel better today instead of having peritonitis - a CT
Scan shows the bowel has leaked/the reversal join been contamin8ed. Mr
K was v big & apologized - said something not cleaned enough when
stitching the join or a cut that didn't get sewn up. He confirmed(!)
that l shdn't drink & should stay on the drip. Drip antibiotics 2nite to start to sort the infectlon & avoid further
surgery. Down the hatch!

--
Sent from my mobile device

Set Back

I'll have been in a week 2morrow. The reversal has made my bowel
unhappy. My tummy is hugely pregnant with wind so altho l can poo l'm
back on the drip until I pump. Even sipping water makes more gas so is
not on. Mobility should help so l do ward circuits with my drip stand.
Wish l was walking Spike who's having a lovely time with Lu & Jen.

--
Sent from my mobile device

Finally - a hangover!

The Pride Weekend revealed new improved energy levels. On Saturday I was able to deliver stuff to the Forum for Shell's shop, do the Outside Broadcast with Future Radio, trundle my gramophone-horned amp round the Parade playing sweet sounds and Pride Live! idents, compere some of the show, deliver stuff back home, sing with Shell, Luke and Alex at Marzanos....and go pubbing until 2am. Finally I can stay up drinking long enough to get a hangover!

Pencilled in

Sue has diaried my reversal op for 20th October which will be a year from my first encounter with Mr Kapur when he rescued me from an unplanned Ileostomy after an emergency admission. I may well be bounced from the list by priority patients but I'm happy to be non urgent this year.

Awaiting Reversal!

I guess Mr Kapur's interpretation of my stranding scan is different to Dr Biswas' - I've had a letter advising that he's scheduling the stoma reversal! This is a pretty simple, non- urgent intervention so I'll probably have to wait a while. I've emailed the wonderful Sue, Kapur's secretary, for a rough idea of when I might be in.

Chips and tonic

This morning heralded an embryonic swirl on a finger tip, a surge of energy and less of a robot mouth (taste buds not Stephen Hawking speak). My throat and belly feel better too - I'd associated acid reflux with cancer and felt a bit blue when I had it for a few days but it's far more likely to be post chemo over indulgence - G&T and Chips.

Stranding in the Way of Control

Dr Biz phoned - he's just back from leave. He said essentially the scan's fine but shows some stranding which is likely to be scarring or adhesions from the op/cancer/chemo. So I have to have another scan in 4 months to check nothing sinister is going on. I'm guessing I stay a Bagger for a little while longer.

Here's the link for streaming or downloading Monday's show:http://www.futureradio.co.uk/podcast/2011/june/pride-live-podcast-27-6-11

Another Day Another Ansaphone

Think I've fallen between the two consultants so I'm hoping the stalwart Stoma Nurses can get in between - they're used to getting to difficult places.

Here's a draft entry to my 'bag on paragon' gallery - imagine it's Kylie not me (tough I know). I hope to get loads of photos of Stoma folk posing with their bags. There are an estimated 1.2 million people in the UK with a bag and another 13500 having the op every year and yet before I had the op I knew no one who had or had had a bag. Lots of new stoma patients are youngsters with Crones or Ulcerative Colitis and knowing about peers and or superstars who've done bags would surely help make the process easier to deal with?

No News

I've left a message on an ansaphone somewhere up at the hospital so I hope to get a call sometime soon re the scan. I'm guessing if there was a problem I would have heard by now but in my darker moments... As ever there's Pride Live to take my mind off everything except the script for the show, and tonight the crew and guests were unbelievable with slick, witty features and cool personas belying the hideous portacabin cauldron of Future Radio. Podcast up tomorrow.

Matt's birthday party last night and I got pleasantly pickled for the first time in 8 months (not that I've been unpleasantly pickled in that time either although I have imbibed a fair bit of poison). So tonight I'm carrying on where I left off with Bagger's Pimms; lemonade (carefully flattened)and cucumber (peeled and deseeded). Hope to have enough Dutch Courage left tomorrow to phone Dr Biswas and ask for the scan result.

Bored

Still tingly, still stuff tastes of metal, still tired; bored now!

My phone Still Ain't Ringin'

To Paraphrase Randy Travis; Since my phone still ain't ringing, I assume it still ain't Dr Biswas. No news of the scan results yet. There is a result from Monday's other exercise in technology though - the podcast is up (although the download file doesn't work at the moment so please press play).

Uncharted Territory

I've had an 8 day break from Xeloda before - the Royal Wedding delayed the weeekly drugs issue by a day - so this ninth day off was uncharted territory. Still metallic mouth, still tingling fingers and toes. An increase in energy was sapped by a bag leak and associated panic, changing and cleaning up. Tomorrow is another day!

Hot Shot

The scan involved drinking a jug of what looked like Pernod but tasted of Dettol over an hour then having a shot in the arm that fizzed round my body in a nanosecond and felt like intravenous Deep Heat and also made me feel as if I'd wet myself. Results over the phone from Dr Biswas shortly I hope. From Radiography to the Radio and Pride Live went well. Podcast should be up on Wednesday.

Pride Live but tiring!

Hear me rapidly run out of juice on last Monday's Pride Live.

Radio and Radiography

I'm happy to be presenting Pride Live at 6pm on Monday so I can get stressed about that rather than about the scan at 3!

Eunertia

The euphoria of finishing the Xeloda course compounded by the residue of 6months pills is making this week the most exhausting I've had. Short of breath, heart pounding and my limbs feel like I'm walking through cake mixture (you wouldnt want to eat it afterwards). Next week the recovery begins.

Last Pill!

At 8.00pm this evening I took my final Xeloda tablet!

3 Little Pills, Well, Quite Big Really

Breakfast Xeloda taken which leaves three more for this evening...and that'll be the lot! As we left the Magnet Man party last night (Ragga Rock, the Pride Posse and miniature horses - what else could you want on a chilly June evening?)the DJ played New Order... 'I used to think that the day would never come...'

Scan

I have a date for a CT scan to check the op and chemo have done their work. I have to arrive an hour early on 13th June so presumably have to drink the heinous milky dye before the scan.

Bag Demon

The bag demon came in the early morning and unfastened one of the bag's Velcro tabs. The bed was saved but the floor got fairly messy. Shell was in the bag-zone as soon as she woke up and began to clean 'nice consistency' she said.

Special Che

I went to Playfest, worked 2 shifts and got very tired but enjoyed Kamilla Lovett, the Woodland Creatures, Barlights, King Blues and Futureheads and being visited by the Pride Posse; Kim, Deanna, Stevie and Shell came and took tea in the caravan. Which wasn't very Festy really but then while others were getting out of it on Special K (Ketamine) I took Special Che (Chemo) - my last week of Xeloda! And I felt a lot healthier than some of the punters - I did a shift with St John's Ambulance and a lad came in with scorched buttocks - his friends had put a lighter to the aerosol of Quicktan he was applying.

Whizz Biz with Biswas

In for my 2.00pm appointment with cheery Dr Biswas and out again by five past. He's pleased that the Xeloda regime has only sapped my energy and fingerprints and has arranged a CT scan in a couple of weeks. He's such a fast worker if he could have done the scan there and then I'm sure he would. Somehow he seems to have engineered the 6 month chemo course to fly by!

New Order!

In the words of New Order's 'True Faith'; I used to think that the day would never come... I collected my last 84 Xeloda tablets this morning and had a farewell handshake with lovely Sister Karen Noonan-Shearer. She thinks my reversal op may be as soon as July depending on the surgeon's lists. Shell's convinced I'll be in hospital for Pride!

Phew Glue

The nightmare was narrowly averted. Last night I slept on while the bag grew to bursting point. I waddled to the Thetford (the chemical loo, not the Forest, 50 miles away), emptied successfully and then, when everything seemed serene and sorted, the classic horror film double bluff...drip, drip. I so did not want to find my bag of bags, draw and cut the hole from the template and blast the bag with the hairdryer to fix the glue at 3 in the morning - mainly because I was fagged out but also because Shell and Peggy and neighbouring campers were sleeping peacefully. So I cleaned up and then clutched the wretched bag to me as tightly as I could. Miraculously it reglued itself and I woke in the morning still purposefully clutching.

Thetford

The chemical toilet has been a great addition to our camping kit, offering immediate bag emptying all through the night. Our loo is, sadly, named after the birthplace of Tom Paine and republicanism and the town which hosted a number of Dad's Army episodes. Good as the toilet is it's a shame that the town of Thetford is now synonymous with a receptacle for s**t.

Toilet Tense

Dusting down the toilet tent and Portaloo (unused standbys for years) ready for hols with Wendy and 5 week old Alex, my they grow up fast. It's hard enough to get myself up for bag emptying thrice a night at home but debagging by torchlight will be something else. At least the incentive not to sully the tiny caravan is pretty powerful. For a while Pregnant Wendy and I had a bizarre commonality - both tired, with fussy diets, unable to do a lot of things - now I have a lot in common with her baby son - always sleepy and frequently incontinent!

Countdown music!

No, not 'Doo doo, doo doo da da da dah!' with a conundrum and Jeff Stelling. Ann Nicholls has suggested I need a song to get me to June 5th and the end of chemo. So far she's suggested 'The Final Countdown' - Europe and my selection is 'Beat Dis' by Bomb the Bass. Any thoughts?

Pint of Bear Please

The end is most definitely in sight for the Xeloda regime but I guess the stoma reversal op and ensuing farewell to the bag won't be for a while. Which is tough because the warmer weather has me gasping for a cold beer (or 'bear' as they say around here). The bag, sadly, cannot deal with fizzy so I'll have to be patient. Mid June though at least promises a glass of wine without a complex metallic nose and underlying hints of Chemo.

Yellow!

All the fuss about Bilirubin was quite apt yesterday, the day we celebrated the Canaries success - Bilirubin turns things yellow! From pee, through bruises and bile; Bilirubin is a glorified personal E number.

Billy's down

Slight hiatus this morning as Thursday's blood test showed Bilirubin levels above the critical 30 level, the threshold for withdrawing chemotherapy in case of liver damage. Nurse Karen took another blood test and the level was down to 15 - the impact of 4 more rest days and Norwich City's elevation to the Premier League no doubt! So back on the Xeloda - my last but one cycle.

How long?

Get an extra day in my week off because of the Bank hol tomorrow. Although my hands, feet and bag calm down a bit when I'm off Xeloda for a week the metallic taste on my Tongue never goes, nor the inertia. As it's only a month and a bit to go until my last pill I'm intrigued by how long it'll take for the taste to go, fingerprints, nous and energy to come back. Shame on those who ask 'Will they come back?'!

Leak Alert Dog

Woke up this morning to Peggy whining and found I was lying in a puddle. Thanks Peg for saving the mattress! The last two times I've had leaks I've found a split in the bag. They are only plastic lined paper and I guess maybe I scratch in my sleep? Can I rely on Peggy or should I invest in a waterproof mattress cover and endure rustling every time we move? Clare Balding tweeted the other day about Radio 4 announcers (her girlfriend Alice!) talking about 'Cross Incontinence' ( I think she means a programme about Ghana followed by one covering Mounties). I get annoyed about leaks but hope 3 times doesn't count as officially incontinent. Keep up the good work Peggy.

Bag around the House

Avoiding the Royal Wedding but remembering that most famous stoma Bagger - Gawd Bless the Queen Mum. Her daughter preserves her memory by always having a bag with her; know anyone else who carries their handbag around the house?

Job a Day

I can only manage one task a day. Yesterday I had two meetings and after the second I was a Zombie and my bag told me off. Oh Dear nothing to tax me me today (not even walking the dog) till Pride Live recording at Future Radio later.

NCFC - Bad for One's Health or a Welcome Distraction from the Real World?

Gosh - still in an automatic promotion place courtesy of a 96th minute rebound off Simeon Jackson's knee! I probably don't have cancer but I might develop a heart condition if they don't wrap the next 2 games up earlier on in the match.

Most NCFC seasons have been entertaining but the years when I, or significant others, have had some sort of trauma have held a compelling parallel turmoil; the year I came to Norwich we played in Europe and beat Bayern and lost to Inter. The year I had Cervical Cancer we were relegated, briefly had Martin O'Neil as manager and then campaigned to get Robert Chase out as chair (welcoming Delia & Michael to the board instead). The month we got to the playoff final was when my Mum died. I don't think there's any causal relation but I'm pretty sure that following Norwich City is a great distraction from the stresses of more important stuff.

Even More Music for Ostomists/Music to Change Bags By

Another playlist for you at http://www.youtube.com/my_playlists?p=6B99192D8B3B7E04

I realise I've wasted time on subtlety; turns out there are a whole bunch of songs simply called 'Shitbag' so I've included one by the fabulously named Plies. Great that a Rapper is comfortable enough with his sexuality to take his rap name from some ballet moves. Give Peace a Chance (cover by Louis Armstrong) is included because it includes the lyric 'Everybody's talking bout Baggism' and also because the title can refer to the difficulties an ostomist may have dealing with small green vegetables.

James Brown - Papa's Got a Brand New Bag
Louis Armstrong - Give Peace a Chance (lyric; 'Everybody's talking bout Bagism...')
Peaches - Bag It
Paul Simon - You Colostomy Al
Plies - S**t Bag
Betty Poo - Doin the Do
OstoMisTeeq - Scandalous
Portishead - Ileum

Billy Rubin?

A bit of a rough time with bags leaking and bursting and a thumping headache which may or may not be down to Bilirubin (didn't he play for the Boston Redsox?) on top of which Wendy beat me at Scrabble going out with a 7 on a triple! Good news that having Alex hasn't sapped her brain and hope the newborn was watching and learning.

Ostomy Art

Steph has made me a beautiful quilted bag cover - thanks again to Sarah for the template (devon_bag_lady@hotmail.co.uk). I need funding for two Art projects now - stunning stoma bag covers is one and the other is photos of Bagger Icons to inspire youngsters preparing for stoma operations.

Here is the link for this week's Pride Live radio show:
http://futureradio.co.uk/station/archives/6643

Stoma Bumsters

Bumsters. Oh how I used to laugh at Alexander McQueen's builders' bottom jeans. Now, as an alternative to dungarees (the straps disappear down the loo too often), they are perfect Bagger wear, allowing the stoma bag plenty of room.

I've always found boy Bumster wearers' anatomy puzzling - my bag prevents gravity from revealing all, but boys? Does the waistband really sit on your parts? If you can hold up the lowest hanging jeans is that a reflection on your manhood?

Myth of Fingerprints

Two thirds of the way through my chemo regime and they've nearly gone! My fingerprints have almost dissolved away to the point that I have very little grip because of the lack of texture on my fingertips so I struggle to open Peggy's black plastic poo bags and am grateful for my bags for life at the Coop because opening a carrier would be impossible. You can still see a few whirls on the index finger and thumb.

Bilirubin up and Fire Hazard

Start of my 6th course today. Feeling ok but Fridays blood test shows an increase in the Bilirubin enzyme in my liver. If it gets much higher it'll indicate that the chemo is causing liver damage and I'll have to stop chemo. I guess that's the end of my odd glass of sherry. Although my palms and foot soles are much better they're still peeling - to the point that I have to clear bits off the bed each morning (not sure if I should put them in the compost?) Not sure I can ever eat Parmesan shavings again.

So I got prescribed some wickedly fat cream for my hands and feet - a million times greasier than E45. The pharmacists have to talk you through your medication so she had to warn that, once loaded up, I would be a walking fire hazard because the cream's made from paraffin. I must keep away from cigarettes and chip pans!

Pollock via Ofili

Horrid accident in the bathroom yesterday - I snagged my bag on my jeans button and ...Jackson Pollock via Chris Ofili on the floor. Later, in a UEA toilet cubicle I had a vision of how the same scenario would have played away from home - and the wimpering apologies to ladies in neighbouring cubicles for any sullying of their footwear. Phew! JPegs withheld by the editor.

Blood relatives

Bridie and Sean have been visiting en route from their holiday in sunny Yarmouth. It's been lovely to see them and next time they visit for Pride I'll be off chemo and possibly bagless. I had my blood test this morning but caught my form on a cut on my finger which hasn't been healing and got blood all over it. I felt sorry for the phlebotomist because the hospital'll think she was clumsy. While I was there there was a bit of a ruck because the Supplies department is refusing to deliver the number of Urine Test Bottles they use claiming they order far more than a normal surgery. It's not a normal surgery - it's a walk in clinic with 300 patients a day. NHS reforms - pissing in the wind (because there're not enough bottles to go round).

Sunny side

Lovely to see the spring sun but I have to keep out of it as I can't deal with the UV even with factor 50 sun cream (which I can't deal with either - I always manage to rub it in my eyes!)It's great to see the seasons change - I started chemo in mid winter and I'll be finished and ready for my stoma reversal by mid summer.

Flaky

Peter suggested I needed Michael Jackson gloves for my flaky hands and Jules has delivered. Apparently the organic cotton keeps moisture in. I've been practising the moon walk but it hurts my flaky feet.

Keeping it Loose

A little light table tennis training last night and my technique has improved in inverse relation to my stamina - because my hand is sore I hold the bat incredibly loosely, barely touching it. I can return or block the spinniest serves. Coaches take note - beat your learners hands till they are raw!

Catch the Pride Live podcast of today's broadcast on Future Radio (not live this week but recorded on Monday when I had the energy to present it). http://futureradio.co.uk/files/audio/1301745600.mp3

Yuk

My sock was bunched up in my shoe and my feet are sore enough already so I took it off to straighten it and...peeled skin fell out! Gonna have to empty my gloves too but haven't got the nerve yet. Maybe good for an art installation? Not good for my self image though.

Xeloda Buddy PolyStrene

One of the definitive voices of my youth was Poly Styrene of X-ray Spex singing 'Germ Free Adolescent'. This morning as I take my Xeloda I'm thinking she's taking hers too after hearing that she's undergoing a number of treatments (Capecitabine is a treatment for breast and colon cancers). I'm also listening to her fab new album Generation Indigo. Go girl.

Pills what pills?

Short term memory went AWOL this morning and an hour after I'd taken my Xeloda I panicked and thought I'd forgotten them. (I had forgotten to tick off that I'd taken them)I had to count the tablets left in the box to check. Who am I?

All Faded Out

An amazing evening at Future Radio recording the Pride Live show for Saturday. Felt pathetic cleaning the headphones with antiseptic wipes to make sure I don't catch anything. Interviewed adorable Ragga  star Magnet Man, gifted chanteuse Jan Ponsford and Pride Prince Charming Joe Ballard. Mucked up a fade and a track start but went pretty well with great support from the crew - Jules, Keren, Deanna, Kim, Shell and Lovely Simone. Fondue at Jules' after. Now totally wasted - probably did too much and a lot of adrenalin may mix badly with chemo!

Can't have too many gloves and shoes!

Balloon

The bag has filters to stop it ballooning with gas. Twice I have forgotten to take off the waterproof filter stickers you can use in the bath and have been grateful not to be near anything sharp as I wobble to the loo.

Hand and Knees

Hands are peeling (note the 'l' Fi) but not hot - just shedding the last few weeks chemo burn. In contrast, my knees feature hard pads of grey skin from kneeling on the bathroom floor for bag emptying. Leaning over from standing saves the knees but risks splashback (facial!).

Oops

Legacy of the week off - keep forgetting my pills! Back on track now.

This Time Next Year

On the front of the local table tennis league magazine is a photo of lovely Eric, a wily player and enthusiastic events organiser who recently died after battling cancer. I said to Michelle I hoped it wasn't my photo next year. She said of course it wouldn't be; I haven't done enough for the League.

Recalculating

Nurse Karen and Dr Biswas have reduced my chemo by a quarter to limit the hand and foot burning and fatigue. Karen wasn't allowed to take 14 tablets out of my meds pack though so I had to wait 40 minutes in Pharmacy. I feel OK about fewer pills - the Xeloda DVD hammered home that a reduced dose is still effective. Also Dr B says that there's ongoing research to trial 4 course treatment regimes rather than 8 so the medication's work may already be done. But Bother! My pill tally in yesterday's blog entry is now inaccurate and needs recalculating. 330 Xeloda tablets to go!

As the dancers say...

For the first time I feel diffident about collecting my pills this morning. I know they'll make me feel unwell. But, as the dancers say - 5,6,7,8; (the courses I have left - that's 448 Xeloda tablets) and all done and cancer cell free by 5th of June. Hey, Gimme those pills NOW!

Under the Radar

End of the week off and hands,feet and face not too ravaged and energy levels recovering so kept out of the lovely Norwich sun at the table tennis Championships with Colin. I was like a zombie for the ladies singles but got it together enough to enjoy/play ok in the Doubles and the Handicap (got to the 2nd round...with a bye!)so I think I kept my chemo status under the radar and avoided embarrassing victorious opponents. I feel good about keeping up table tennis training, even if some weeks I've only managed service practice. I don't move too well but my synapses still fire. And we won cookies in the raffle.

Here is the fuzzy felt that Shell has made to go on the Pride Banner. Under the mini-me's top there's a mini stoma bag (obv). If you'd like to make one, the background oblong should be 15cm high (no limit on width).

There will be blood

Blood test this morning to check the little White Cells. Tele-clinic yesterday (that's phone not vision or pathy) and Karen said the findings on B6 weren't clear but I should give it a try. If the peeling on my hands doesn't clear up the Xeloda dose will be reduced. They'll keep an eye on the fatigue as well - didn't make it to choir last night so had to watch Liverpool on TV. The best bit was the minute silence for Japanese Tsunami/Eartquake victims; fantastic respect not managed at Old Trafford or Stamford Bridge this week.

Après Moi Le Deluge

The bag doesn't like my week off - it works out something different is going on and the contents get liquidy and keen to escape. Last night's delicious Chinese at Nick's made a break for it at about 4am and lovely Shell changed the sheets and got me fresh PJs in her sleep. Thanks Ann for the jelly babies - I ate half a bag but I think I need gelatine in vats right now!

To placate the bag I'm listening to the wonderful Regina Spector:
http://www.youtube.com/watch?v=_gdBvdN0Auc

Belated Wisdom

Wise after the event takes on a new meaning as a wisdom tooth has decided to carve its way through my gums while my resistance to infection is pretty low. Bring on the paracetomol.

Boos

I was right to stay off the booze - last night I had a 1/4 glass of wine and a sniff of David's Laphroaig. Despite the Malt having a whiff of the medicinal about it my hands and feet were ferociously hot and itchy all night. Boo! Not sure if alcohol just stops the liver getting rid of the chemo, interferes with B6 absorption or inhibits the DPD enzyme. Should be ok for a snifter or 2 by Tuesday evening - the chemo only stays in the system for 48 hours. Hurrah!

Half way there

After this evening's four chemo pills I will be half way through the course. And for the first time my week off which starts tomorrow will be 7 rather than 6 days as the nurses have worked me onto a Monday start. So I'm guessing this is as weedy as I'll feel. I'm certainly starting to dislike the last few days of week 2 on Xeloda; the cycle to Cinema City tis morning felt like the last leg of a triathlon. But my immune system should be buoyed by the week off as it was by yesterday's Moules Frites (loads of B6 and Zinc) bearded and debarnacled by Master Chef Stevie.

Fug

Phew, the last few days of medication week two fug. Just hung up a few fatballs. They're in line with the windows so I can lie on the bed and watch the birds eat the seeds and nuts forbidden me by the diameter of my stoma. I am utterly exhausted. This time last year I was fixing 12 metres of new gutter fascia and underlay support trays with lots of screws and swearing. Do I prefer lying around watching the birds scarf nuts and England play poor cricket? Screws and swearing everytime.

Things You Didn't Know about the Bag 4. Hand Bag

The bag gets warm as it fills and is quite comforting to hold particularly when you're a bit chilly (for me at least at least although Shell has been known to snuggle up to it). Sorry if this seems pervy.

International Women's Pancakes

My red feet stopped me enjoying the whole of Heather's excellent International Women's Day walk through the City with tales of Gurney, Martineau, Fry and the Britons and my red hands stopped me clapping the fabulous comedians at the Playhouse Lady Haha gig (I whistled instead). I can't really blame my badly flipped pancakes on either - just general malcoordination.

Sparkle and Goo

Last time I had cancer I mentally blasted evil football tumours into outer space with the aid of Eric Cantona  while on the radiotherapy table. This time the treatment is ongoing so I haven't been tempted to periodic imaginings. I have played some iPad games which seem quite symbolic though; World of Goo features rather charming Slime Balls which have to be pulled into off kilter cellular structures in order to be safely collected in a jar and reduced to toxic liquid, while Sparkle involves removing relentless chains of balls from colonic passages before they clog up and cause chaos. Don't worry, I don't think the iPad causes cancer (or cures it!) but it makes recuperation a lot more fun.

B6/107.8FM

Finally took some vitamin B6 and burning is no worse. Fatigue definitely under control - had great fun on air with Pride Live at Future Radio this morning (podcast available at http://futureradio.co.uk/station/archives/6643), then coped with missed penalty at Carrow Road and am now ready for the new Cobalt Blue club night this evening. Maybe B6 is the new speed?

Out of Quarantine

Shell is back from the Isolation Ward (she's been staying at Stevie and David's to keep me safe from her bit of a cold). She's happy to be home but missing her medicine - David's been giving her a range of malt whiskies. I am missing my measly half glass of wine as I'm trying to alleviate my burning hands and feet side effect. Vitamin B6 might also help and I thought I'd get some this morning while walking Peggy. I fell victim to my other side effect - chemo brain - and came home empty handed, having forgotten.

Where's the Hairdryer?

I've been lucky recently and not had any leaks for a while. I think my bag technique is getting better and the volcano-like fistula has settled down. I also try not to eat acidic food as it can dissolve the bag glue. Putting the new stoma bag on a radiator for a few minutes before you put it on helps it stick. When summer comes I can use a hairdryer (it'll be the first time I regularly use one).

One dose short of an enzyme

Oncology Nurse Karen says the burning hands and feet are caused by excess chemo. Xeloda becomes effective when processed by the DPD enzyme (google for full title - my touch typing's not good enough on the iPad). People have different levels of DPD - if you have none, Xeloda can be lethal. Towards the end of my last cycle I must have been a bit short on DPD; hence spare chemo burning my extremities. If it gets bad they'll reduce the dose but 4 days into my 4th cycle and all's well.

Mussels and Honey

Last week's sore belly was caused by the bugbear of Ostomists - a blockage. The stoma can't deal with chunks of fibre because, after surgery, it's narrower than the normal small colon. I think the culprit was a bit of iceberg lettuce; definitely not worth the trouble. I've gone OCD about checking everything I eat now and can spot a tomato seed yards away. I'm also trying to up food good for my immune system so had some mussels yesterday. Before swallowing my last delicious mouthful I detected some scary sharp bits of shell I hadn't rinsed off. Cue Psycho shower scene music. Stevie bought me some Manuka (tea tree) honey which is lovely and apparently anti bacterial and anti inflammatory. It certainly doesn't have any sharp bits in. So get the toast on (no crusts, no whole grains, no seeds....)

Big Bagger is Watching

Got this exciting email:
"Diana, bag a bargain and welcome in springtime with great deals from Betterware"

Dont need bargain bags - they're on the NHS (well, for now, notwithstanding Mr Cameron). The bags cost around £7 each so there's a moral pressure to get it right when you cut the hole to the shape of your stoma with the special round ended scissors and not go over the 1 every 2 days quota (I should explain that it gets emptied several times a day - some people think you just chuck the bag when it's full which would be pretty gross after 2 days). The stoma can change shape over time which complicates things and it's hard to be a scissor happy Tony Hart kneeling on the floor with your trousers down.

And the Ostomy Award Winner is...

The Ileostomy Oscars go to

Actor in a Leaking Role:

Cileum Murphy
Colon Firth
Russell Crowe
SToma Hanks
SToma Cruise
Jodie FoStoma
Jane Russell

Best fileum:

The Legend of Bagger Vance
Fried Green Stomatoes
Stomalone
Play OstoMisty for me
Stoma(Coma?)
Ileum Dollar Baby
The Simpsons (featuring Stoma Simpson)
Bagdad Cafe
Stoman Holiday

Sore Tum

Wow my belly's bloated and achey. At least my bag output has calmed down and I'm not getting too dehydrated. Thank goodness for World Cup Cricket on iplayer; a great distraction. Weirdly it was also held in India 15 years ago when I had treatment for Cervical Cancer. I should make plans to be on the sub continent next time, not TV viewing during post cancer recuperation.

Where do Ostomists buy their bags?

Stowmarket

Joke's on Me

I finally got a squitty bottom (well, bag actually which is much more convenient) I'm hoping it's just a bug while my White cells are a bit low, rather than the start of a side effect. No amount of gelatine can stop this - I've had marshmallows and jelly babies to excess. The bag means I can see the Go Team tonight without interruption and in relative comfort.

How can you recognise an Ostomist?
Because they say their bag's half empty

Red Handed

First day of my rest week so I hope the rawness on hands and feet calms down. While mulling over holiday options I worked out that my last day of Xeloda tablets will be 5th June. That's 15 weeks away so I'm over a third of the way through. Hurrah!

Hot Footing it

Colin's off to a villa with pool in May with Rachel, Brett and other mates. I was very tempted. All the advice suggests sun and sand don't combine well with chemo but hey? I could Factor up, stay in the shade, take it easy. But the trip turns out to be in my last week of Xeloda - I could be very weedy. Since I said 'no' my feet have been been burning like I'm walking on hot sand anyway (the Hand/Foot syndrome side effect); I'll get my book, mp3 and some sangria - who needs the Algarve? Here's a snap of Col on hol sans moi:

More Music for Ostamists

A few more suggestions - Nick suggested Goldfrapp's Brown Paper Bag, Shell any show tune from Nanki Poo and Liz' offering is 'once, twice, three times a poobag'. Thanks for that Liz. Lara suggested the Kooks album. I have a few more stoma/bag/ostomy tracks too; on YouTube for your listening pleasure:
http://www.youtube.com/my_playlists?p=86D7AF900AE0897D

Goldfrapp - Brown Paper Bag
ostoMisty Elliot - Get Yur Freak On
Whitney Houston - Ileum Dollar Bill
Hole - Pretty on the Inside
Wheatus - Teenage Dirt Bag
The Kooks - Stoma Song (from the album Inside In, Inside Out)
Jackson Brown - Running on Empty
New Order - World in Motion

Things you didn't know about the bag 3. Has She Fragrance?

You can tell there's someone with a stoma around when the bathroom smells of plastic. There are far fewer bacteria in the small colon than the large colon so ileostomists are way less stinky than other folk. When I empty my bag there is usually no smell but occasionally an odd plasticy pong. Sometimes there's the aroma of my most recent meal (anything cooked in red wine is disturbingly mouth watering).

Stoma Teddy on tour in Africa

I checked my blog stats today (I needed to know if I was just wittering on to myself) and there were 13 hits from South Africa - aimed at Stoma Teddy. The images on the blog are also shared on Google Images (I hadn't realised this until recently so do let me know if you'd rather not have your privacy abused in this way). I would be delighted though if Ileostomy Ted became an international Cause Célèbre - prettier than Pudsey and putting Baggers out there, taking the stigma out of stoma. So welcome South Africa but high five also to Sam, a regular blog reader in Ghana.

Bag this

When the postman came today I had tears in my eyes - and tiara stones on my new bag cover. Thank you Peter; it's beautiful. I feel a collection coming on! It must have taken ages and the measurements must have come from the bag fairy because it's a perfect fit. But can I defile this objet by using it to cover my stoma bag?

Squash

I had a Breast Screening this morning with some pretty retro technology in a prefab in a carpark. The X-rays were Analogue Film and the lady before me had to be re screened because the film cartridge jammed. The perspex head guard fell off when I brushed against it and I hit the portacabin changing room walls with my elbows a couple of times. A revamp is due next year when a digital system should arrive. I hope it's not designed by someone who thinks all women are configured like page 3 models with flat stomachs and enormous breasts. My belly, enhanced with padded baggage, protudes further than my 36 Bs and the current machine doesn't allow for that. So much pushing and pulling was required to get the objects of the scan squashed between the photo plates. The staff, of course, were wonderful.

Here's a photo of yesterday's champagne breakfast complete with new red stoma bag hiding pants. Thanks Valentine!

Lucky Genes

I'm really lucky so far - nearly half way through my course of chemo and no nausea, diarrhoea or sickness. Most people taking Xeloda get at least one of these symptoms and others may have side effects so bad they have to switch to another drug. DNA plays a huge role in how we react to chemo. In future it's likely that the type prescribed will be matched up genetically - avoiding the side effects dodging hit and miss system we have now. I'm participating in a study which may progress this. 350 people currently on chemotherapy at the Norfolk and Norwich hospital are having DNA analysis through regular blood testing and cataloguing of side effects and effectiveness of the anti folate (5-FU) drug Xeloda. It's great to be able to have my medication as a pill at home rather than through an IV at hospital (and oral chemo has only been available for treatment of Dukes' C colorectal cancers like mine in the last few years). More research to refine the drugs and make them more user friendly can only be good news.

Music for Ostomists

Jules and I did a dummy radio interview while training at Future. I talked about Table Tennis and peppered the chat with references to Ping Pong in music (Damon Albarn plays on tour, Flying Lotus and Art of Noise have both used a ball as a beat... (I could, and did, go on cueing yawns from the Pride Live Team). So I've devised an ostomy playlist for the delight of blog readers. One problem is that, as I mentioned in a recent post, ostomists are very closeted so it's impossible to identify artists who 'bag'. Instead I have wilfully misinterpreted song titles and artists' names in order to make an association. Hear the tracks at http://www.youtube.com/view_play_list?p=DFBB2C94B53A33AE and let me know if you have suggestions.

Di's Music to Empty Bags By:

Gorillaz - Sunshine in a Bag
Ladyhawke - My Dear Ileum
Leaky Li - I'm Good, I'm Gone
James Brown - Papa's Got a Brand New Bag
Van Morrison - It Stoma
Eric Prydz - Colon Me
Rufus Wainwright - Stoma Over the Rainbow
The Carpenters - Colostomy (They Long to be)

(Sorry iPhone/iPad people: the YouTube playlist doesn't seem to work for us and I can't find an app for that.)

Things you didn't know about the bag: 2. Gurgles

The stoma gurgles while it's at work - a charming, happy sound for me because in hospital it signalled coming off the drip. Less appealing and very loud in a packed cinema when you've taken your cardi off.

Title of this post? I forget

Carol's back to Bournmouth so no one to lead the stretches for me and Peggy this morning.

 The sweets she left are clearly aimed at ostamists - not just because of the gelatine content; get what they look like. Not sure Stoma Jellies would sell as well as the Raspberry variety.

Nurse Karen recommended high factor sun cream for the face and hand spots (the spots don't seem to appear where the sun don't shine). She gave me some Chlorhexidine Gluconate in case my mouth gets sore again and she said problems with short term memory (like forgetting whether I've taken my pills or what I went into Co-op for) is a classic chemo side effect.

We relistened to Pride Live Radio, not because I'd forgotten about it but because it was good to hear it away from the mayhem of the studio. It's possible Future may ask for a weekly programme which would be great for me - ideal Occupational Therapy if I can keep a handle on fatigue and remember what I'm supposed to be doing.


http://futureradio.co.uk/audio/play/6682

Best Poke

Carol arrived to stay bearing fabulous gifts - wine, gelatinous sweets, wagon wheels of course, a bouquet of foliage with interleaved fondant fancies (sorry no photo as they were all eaten - well, not the foliage) and the cutest bespoke bag cover ever seen. She accosted a guy in the pub who used to have a stoma to check on sizing. Thanks Mr Jones!

6 Day Week

My White Cells must be down a bit because the inside of my mouth is sore - the chemo kills healing cells as well as cancer cells and your mouth contains a lot of sharp objects and is prone to infection. Red Cells down a bit too - I can get VERY tired. My recovery weeks are only 6 days until I get onto a Monday start for the chemo so I'm guessing I'll really appreciate the extra day in mid March. Loads of E45 seems to be keeping my skin happy but tingling finger tips mean I can't click along when the choir sing Fever. I get dehydrated at night - last night I woke up and my eyelids were glued shut! Still no nausea or diarrhoea so it's nearly all good.

Things you didn't know about the bag : 1.Hugs

Ostomists may hug the wrong way. I've recently banged heads as I go for a left side to left side hug to avoid bag rustling.

Pills and Buttons

The start of my second rest week (only 672 pills to go yay!) and I'm seriously lacking energy. Chemo obv but  busy evening garnering vox pops at the LGBT History Month party (ready for Pride Live Radio) and then NCFC once again waiting until the 90th to score and keep us 2nd in the table.

My thumbs feel sunburnt. Jojo says her Dad's fingertips deflated when he had chemo. Iain suggested a life of crime awaits but Waggsie pointed out I'd be too tired to get away with it.

I now get to monitor the effect on you of the chemo's effect on me! 'Reaction buttons' are on the blog because commenting can be a palaver. The buttons can be edited so let me know if any strike you (...Dull, Too Much Information, Yuk...)

Pimp My Guard

My lower lip is sticking out a bit. The Ostomart Ostoshield Guard and Belt just arrived. No spandex, no go faster stripes; generic medical supplies issue. I'm going to have to pimp it - I might take you up on the rhinestone applicator Peter. I'm pleased to have it though. The table tennis table corners look much sharper these days. Sharper than my play anyway which at 9.30 last night had a whiff of chemo about it. Hurrah for Ruth Bullard who has played 4 matches in 10 days to make up our team's outstanding ties - postponed due to heart problems, cancer, pregnancy and ... a persistent cold (Colin!?).

Bag Wearers of the World Come Out!

Being 'out' as an ostomist is on a par with coming out of the LGBT Closet. Very few celebrities have confessed to bag wearing. There are various online lists of famous ostomists : John Wayne, Fred Astaire, Bob Hope, Tip O'Neil, Red Skelton, Ed Sullivan, Loretta Young, Pope John Paul II, Virginia Ironside and of course the dear old Queen Mum. The jury is still out on Cliff Richard. Where are the kids?  Lots of youngsters have stomas for Ulcerative Colitis or Crohns (many get well and then have the op reversed) but there're no celeb bag icons for them. I found my own role models - Rob and Neil both came out to me as ex bag wearers - which was heartening and helpful but it would be good to know about the actors, writers, sportsmen and women, singers, rappers.

Russell Martin has been a revelation at right back for Norwich this season with countless classy crosses and goal assists, 4 goals and stalwart defending. He didn't look so hot when he arrived from Peterborough last year and he revealed on Saturday that he had had anaemia from Ulcerative Colitis. His colon is healthy now (hopefully for good) but I'm wondering whether a League footballer could play with a stoma. Obviously shirt removal celebrations could be awkward, and team mates might be reluctant to stand alongside in the wall.

Cover!

The Devon Bag Lady has sent my custom made stoma bag covers (and you're right Margaret - as Burns might have said 'A bag's a bag for a' that'). The Skull and Crossbones is a warning to any lingering cancer cells and Dennis the Menace looks good on Peggy (Gnasher). The Camo? Well it'd be messy if the bag got shot at. Thanks Sarah! http://www.stomapouchcovers.com/About-Us.html

Don't Forget Your Chemo

I have a problem with Xeloda's two weeks on, one week off regime. The week off weakens my Pavlovian pill taking response after meals and I've almost missed my medication a couple of times. It's vicious stuff and has to be taken within 30 minutes of a meal with a minimum of ten hours between doses. So Shell has adapted a jingle written by Choir Mistress Stephanie and we sing it to remind me. Here we are singing with Stevie. Excuse the atonal quality - we'd had a tough evening of table tennis.

http://www.last.fm/music/Dicee/Don%27t+Forget+Your+Chemo/Don%27t+Forget+Your+Chemo

Toilet in 10 languages

For a change we've been thinking about vacation rather than evacuation, packing rather than emptying bags. The Xeloda advice warns against Sun, Sea, Sand as convalescence. Chemo makes you more sensitive to UV light and sunburn/melanoma. And I imagine the sand would be an irritant in the glue of your bag base plate. Peter Wilson cites hellish US immigration for someone on Xeloda with no fingerprints http://www.neatorama.com/2009/06/02/man-stopped-at-airport-for-having-no-fingerprints/ and there are tales of ostomists having rough pat downs courtesy of airport security. Screening was probably upped in the States by the recent arrest of rapper PSD who claimed the bulge of the 6000 ecstasy pills he was packing was a stoma bag. Believe the online forum braggadocio claims of importing litres booze into festivals? More than half a litre and the bag will be too heavy for the glue and won't look realistic, for the stomaless the bag hole needs to be water (or vodka) proofed and bag users suffer stock depletion angst and are unlikely to donate willingly. You'd be better off with a wine bag. So we'll wait till the weather improves and go off in the caravan armed with top tips on 'camping with a stoma' from a Dutch site which describes the process as 'exciting', gives the word for toilet in 10 languages and suggests a meat hook might come in handy(?).  http://www.stomaatje.com/holidays.html

Can't have too many bags and accessories

The bag rustling referred to in the Teddy post is a minor irritation (I mean the sound of crinkling plastic not poo thievery). It seems to be noisiest turning over in bed; not an alluring sound. Several entrepreneurs offer covers to make stoma bags quieter (decibels) and louder (style). I found one site selling covers made of everything from lace to Kevlar (bullet proof your stoma!).  Dan Male, who had to use a Hickman line, developed 'Joey Pouches' for various medical kit. http://www.joeypouch.co.uk/  Funky fabric covers surely look better than the American Tan bags (there seem to be no bags in non 'white' skin tones; don't people of colour have ostomies?) and should you have a cover on a transparent bag?  S**t yeah!   I'm heading off to John Lewis fabric department.

Dr Biswas Makes it My Business

My oncologist says my pantomime face spots (which have subsided) may or may not be caused by the chemo. He is a non committal guy all round - it may or may not be a good idea to have a swine flu jab (or to have chemo at all). No danger of me not feeling in control! He is pretty sure that being fit does not hamper the chemo. On the other hand he has had patients who have burnt out from trying to maintain excessive fitness. I understand his approach - encouraging me to make my own informed decisions - and like to think if I needed steering he would adapt. Nurse Karen checks on me twice a month - on the phone and at the hospital and that's enough mollycoddling. Still, when I get the 5 year all clear I'm gonna give Biswas a big hug. Then we'll see how cold and fishlike he is!

Ileostomy Teddy

I know you are all too polite to say but there seems to be some curiosity about The Bag. Steph and John suggested doing an abstract of my new appendage and covering (Chris Ofili's work springs to mind). Meanwhile Shell's Shelly Teddy agreed to show her stoma (part of the small colon) and model a bag.

And fully dressed no one would ever know! Actually that's not strictly true - there's quite a lot of rustling.

Below the Belt

No problems at training bar a bit of soreness. I've put my order in for my swanky Ostoguard Shield/Belt combo which should help. As I exercise my breathing gets deeper and more comfortable. The curse of Google again though - I read that the fitter you are the more able you are to fight toxins in your body. Heat shock proteins may negate chemo and stop it doing its stuff. Another conversation with Dr Biswas tomorrow. Heat Shock supremo Sean Munro and many other commentators have given the theory short shrift.

Well Spotted

Had nurse Pippa for my chemo interview; checking how it's going and giving me the next course of pills. She said red and white blood cell levels were good and was pleased with the minimal side effects (tingling finger tips, shortness of breath). She asked if there was anything else, looking straight at me and I said no. In the hospital loo mirror I saw what she thought I might want to talk about: big red splotches on my face. I really must look in the mirror more often! They don't hurt but I look a bit like I have an STD or cartoon measles I'll check it out with Dr Biswas on Wednesday.

The Cliches are All Right

Gmail and Apple mail have ceased interacting for me and I cant send email. Jules and I took some of Fi's baked pies to football - yum (Jules elected to have no gelatine and she claimed this was fine). My confidence waned towards the 90th minute when Russell Martin scored and we were jubilant. Of course Bill Shankly was wrong football's not more important than life or death, neither is functioning email. And I can be smug for the next few months receiving life's minor stressors with a phlegmatic shrug because at the end of the day, in the scheme of things, the cliches are usually right and if no one's died it's not the end of the world. Been there, done that.

Thanks Lucy

The skin on my belly has healed thanks to Lucy Russell's stoma nursing wizardry. Shell asked if I'd posted a photo and I said I wasn't sure the blog readers were ready for that. Maybe a drawing?

Pie eyed

Got home from my blood test to find Fi had left a very exciting delivery - a consignment of Bray's Cottage Pork Pies (eulogised by me and also Giles Coren). Unlike the ones we've bought before these are frozen so we can bake them; they come with kit for glazing and a syringe for adding the desired amount of gelatine! Maybe I can use the syringe to add gelatine to all my food (it's one of the heroes in my Stoma Diet list). Thanks Fi - will be taking several warm pies to Carrow Road tomorrow. Sorry Wagon Wheel bearers - your offerings have been knocked into a cocked hat.  http://www.perfectpie.co.uk/

I was a bit breathless on the way to the Clinic and wondered if it was because I didn't do my breathing/stretching routine this morning. When I cycled to the Clinic for the second time (Doh I left the paperwork at home) I felt ok so I'm guessing exercise helps manage the chemo effects. Table tennis training tomorrow then and I'm sure Martin will be gentle with me.

Technology!

My teleclinic didn't happen because we didn't hear the faltering home phone ring. Nurse Karen left a message saying she'd see me on Monday. I hope I'm not in disgrace. The good news is there is no news - no serious side effects. The blood test tomorrow should confirm I'm good for starting treatment again next week.

The muffled telephone was a contrast to the crystal clear audio kit we used yesterday in training for putting the Pride Hour on Future Radio. Podcasts will be available!

Proctogram

My bottom has been safe from probing for a few months but any incipient modesty was curbed by the proctogram preparations - very cold jelly squirted into the JPouch via an inserted tube whilst wearing a gown made, appropriately, of JCloth. Dr Preston showed me the on screen images and it all looks fine - this part of me has no leaks. Thanks for lunch Stevie and for escorting me from the premises.

Volcano

Stoma nurse Lucy Russell identified my leak as a volcano (her own description of a fistula which spews poo). She said that it's a freak caused by an errant stitch and can only be sorted with surgery (and that has to wait till the stoma reversal). She got me a different bag which should be able to accommodate the stoma and what is, essentially, a mini-me stoma. So much for NHS rationing - buy one get one free! Lucy has ordered me a special belt and Osto Guard for playing table tennis. Maybe I could get a mini Osto guard for the little volcano. Aaah! I'm a bit disturbed at my capacity to love and anthropomorphise my new body parts

Hawaii

Tomorrow I'll take the last pills of my first cycle and start the week off. I might begin to get more side effects although the sneezing has abated and the wall of fatigue I felt as soon as I started taking Xeloda is way less severe. Maybe my morning stretches and breathing help. I checked out the lower back moves on YouTube with a guy on a beautiful beach in Hawaii and I like to imagine I'm there and it works until I feel Peggy's wet nose. I had a jpeg of us both doing the Camel stretch but people might suggest that Peg is just standing like a dog and not actually participating so here is the cat stretch:

Dripping

The hole in the dyke is still leaking a little but the skin is healing and no small Dutch boys will be required. I thought my cold was going on forever and the sneezing got frantic yesterday (which took a toll on the laundry as the hospital catheter fallout continues if I can't cross my legs in time). Apparently Rhinitis is a side effect of Xeloda - I'm allergic to chemo! I'm sure the oncology team can sort it out. It would be soft to have to come off Xeloda because of excessive sneezing rather than something cool like losing my fingerprints.

Stretches

My joints and back are getting achy so I do some stretches every morning and today Peggy joined me. I'll see if she'll do squat thrusts tomorrow.

Apparently, although chemo hits the red blood cells hard and generates fatigue, it's still good to exercise. So we're trying to do a decent walk everyday (we bumped into lovely Sarah Roby on the way back from Whitlingham Broad who is the first person to promise Wagon Wheels) and I'm back in table tennis training and hope to be selected for matches even if it's only doubles. Unfortunately the captain is also my nurse so she may have qualms about me playing. More likely, as captain, Shell may judge that I might be completely weedy and ineffective and drop me. Of course I could always play the cancer card with my opponents...no I couldn't ...could I?

The Pub!

Went to The Murderers with Jules, Lu and Jen to watch Arsenal squander their dominance of Man City in an anything but dull nil nil (the excitement was enhanced by 3D viewing; not the players and pitch but our eyes looking creepy and the ads). I had a mulled wine and a pint of squash, that's a binge for me these days. Our friend Carol works in a pub and a punter explained to her that it's not a good idea to change a stoma bag when you're drunk. I hope she wasn't on toilet cleaning duty that night.

Had another rite of passage as my bag leaked at 3.30am, miraculously only on me. Even the clean up/powder/washer palaver was a piece of cake. Maybe it was the mulled wine. Lucky girl - like Man City I got away with it.

Busy (ish)

Next week's schedule will interfere with my thumb twiddling (they have a touch of Hand Foot syndrome this morning and are a bit numb). I've got an appointment on Monday to see what can be done about the little leaking hole at the side of my stoma, Tuesday is a proctogram in Radiology to see how the J Pouch is healing (the substitute bit of colon I'll use when the stoma op is reversed), Thursday is the telephone follow-up from the chemo nurse as I finish my first 2 week course and Friday is a blood test to check I'll be ok to start chemo again the following week. And of course I have to get my tax return done (while finding a way of watching the Australian Open on the internet now that the Ashes are over). I should still find time to blog!

Biscuits

I've googled and read other blogs to get gen on how to deal with the stoma and chemo. Food and drink can be tricky so I've pooled tips and added my own in a 'Di's Special Stoma Diet: Heroes and Villains'. Since I first went into hospital in October my food intake has been fiercely anti vegan - chicken, steak, cheese; double, soured and whipped cream (and cream cakes). Managing the stoma has made my diet even more like the food from Abigail's Party as I've been guzzling gelatine - pork, lamb and bovine. Not just in pork pies but in Haribo Sours, Jelly Babies, Marshmallows, tea cakes and jellies. I had a vague memory that Wagon Wheels contained gelatine but we've been unable to source them in Coop or Tesco. My online search confirmed that Burtons do still make them in their Welsh factory. It also suggested that they are impossible to flush down the toilet (not sure that bodes well for the bag). Check out your favourite biscuit: http://www.nicecupofteaandasitdown.com/biscuits/reviews.php3?item=7

Plumbing (the editor has withheld the jpeg for this blog entry)

I am still struggling with a small leak at the base of my stoma and stuff gets on to my skin and makes it sore. The stoma nurse gave me some squidgy sticky 'washers' to mould over the hole. We had to change the washer and bag as well as put on stuff to repair the skin - cavilon and orahesive powder. My small colon was not having a good day and the stoma roman candled liquid poo every time we had cleaned and powdered and then hooplad the washer into place. The excess powder has to blown away but Shell ducked and dived like you do with Icelandic geysers and avoided a shower. There's an arcade game in there or maybe an app for that?

Not what the Doctor Ordered

We both have colds! All the advice is to avoid colds and flu because chemo messes with your immune system. It's early days so I guess my white blood cells are ok - my temperature is well on the safe side of 38. The red cells are not so hot though - shattered by yesterday's trip to Carrow road (not the walk; just the stress of hanging on to 1-0 in the 2nd half).

Big Ugly and Pink

I mentioned footballer Wayne in the blog entry title below simply because we don't have a player at Norwich for whom we use this chant (we did sing it for David Mooney on loan but that was possibly derivative) and because the other common subject of the 2 and a half note siren song is hated manager of neighbouring Tractor Boys - Roy Keane (Keano). Of course the eponymous ex Evertonian Man Utd striker is also generally reviled even by Man U fans but a) I have a soft spot for him after watching him be a kid with the kids on 'Street Striker' and b) he reminds me of my chemo pills; big ugly and pink (although Xeloda has a better recent form record and as far as I know doesn't use prostitutes).