884 to go

I have to take a fortnight's course of tablets 8 times over 6 months. This morning I took the 12th of 896 Xeloda pills. Only 884 to go.

So far the only obvious side effect was my finger tips tingling in the night but my fingerprints are still there so the heist is on hold.

Chemo! (to the tune of 'Rooney!')

I have just taken my first chemo tablets. So far so good. I have to take 4 in the morning and 4 in the evening for 2 weeks with a week off. If any cells from the tumour are still hanging around this should polish them off.

Sorted for Pills

Collected my chemo from Karen who made Shell's day by giving us a drug management chart. I'll have 8 courses of Xeloda (Capecitabine) over 6 months. Karen advised us to get a thermometer and acqueous cream - as well as nausea I need to watch out for fever and hand/foot syndrome (which, thriller fans, can erase fingerprints!). The most likely side effect is diarrhoea so we went to pharmacy to collect some Loperamide only to meet Bex on the way who sorted it asap.

Checked out my leaky stoma with Sharon and, of course, she could see nothing obviously wrong. Hopefully the fistula or whatever it was has healed. I have various powders and ointments to help heal the sore skin.

Dicee Leaks

The Savages Christmas party was as raucous as ever with the Wilkes/Hollys winning the quiz trophy. I retired early pooped by the travel and two leaky bags. I'm pretty sure I wasn't stinky (in this family the chance to laugh at a fart is seldom missed and I'm proud to know I wouldn't have been spared) but apologies, Tom, for hogging the bathroom and thanks to Bridie for her no questions asked laundry service. The skin on one side of the stoma is sore from leaking and I'm a bit worried that chemo won't help so I'll check it out with the stoma nurse tomorrow before the chemo appointment.

This morning an enormous good luck poster was on the kitchen wall, with messages and drawings from Katie, Niamh, Charlie, Eve, Heather, Tom and Ellie. The drawings were mainly of lucky stuff (including a Norwich City scarf) but I think there was some poo too(or a very primitive, brown clover?); gritty realists these Brummies and Mancs. And yes I suppose poo is lucky.

Tom's scarf sketch should have alerted us! While driving back to Norwich wondering how many layers to wear we heard the result: Norwich 4 Sheffield United 2. To us the day before the Wednesday my chemo starts is just a Tuesday and Tuesday games are at 7.45. To everyone else the Tuesday after a Saturday Christmas is a bank holiday and bank holiday games are at 3pm. Great result though and we're relieved we don't have to go out tonight.

Stuffed

Boxing day games and buffet at Wendy's with Jessie, Victor and Dave. Ate too much but worked it off with the Forehead Name Game, Charades and a sing song. Had belly ache but not too bothered as distracted by amazing Ashes highlights - surely we can't lose! Read in someone else's blog that jelly babies and marshmallows are good for stabilising my bag because of the pork gelatin; yum! Will put them on the Chopin Liszt we got in our Christmas stocking from Marg'. Nick gave me marshmallows with my Christmas peppermint cocoa - smart guy. And we're all smart for not getting Palace tickets as the match was frosted off;"Championship? You're having a laugh".

Happy Christmas

Thanks and Christmas Greetings to anyone who's shown the slightest interest in this blog (including someone in Russia who found it in error by Googling 'Fightstar Things'). I know some of you who check regular for dirty bag stories and send heartening messages; but the volume of hits makes me think that there are a lot of folks misdirected by their searches. Either way it's great to feel so supported and it's been really useful to keep friends and family up to date without endless difficult calls and texts. Check back next week to find out how the chemo's going.

We are both exhausted - home from London with my favourite Bolognese al Forno for dinner as we had Christmas dinner with Dad last night. Contentment slightly marred by the disappointment of the end of Christmas Angry Birds.

Itchy Bag

It's nothing like the belly pain I had but itching where my bag sticks on is real torture - having a good scratch would be dangerous! All set for Christmas as my new (Superdry appropriately enough) dungarees arrived. Should help minimise itching as well as making me look cool, well, a cool toddler.

Substantial Gains

Jules contributed to my increasing girth last night and relieved Shell of Hostess duties by plying us with alcohol laced cheese fondue. I weigh 4 kilos more this morning than when I came out of hospital and 3 of those probably came from the copious amounts of Gruyere and Emmental. Jules and I beat Colin and Wendy at Trivial Pursuit. Exhausted from lovely birthday and visits from Frankie, Stevie (who brought Justin campaign bunting) and Nick.
Blood test today - hope it doesn't show up too much alcohol (mulled wine, red and white wine, rum and ginger; Shell said the ginger was therapeutic).

Happy Birthday

Glad to be older (been contemplating the alternative recently) and enjoying my birthday breakfast of Kedgeree. It's going to be a nice day.

UTI F'd Off!

Dr Valdez proclaims all blood and protein gone and says residual pain is from healing - Ding Dong the bugs are dead! Bring on the Capecitabine (chemo drug). The Doc said to get back to him anytime if the infection returns and is confident it will be long gone by the 29th.

Had a warm feeling about Dr Valdez and then another - and found a trickle running down my leg. The great thing about not trusting my body is that I was hugely relieved to find that I hadn't closed the Velcro tabs on my bag. Hurrah! Nothing serious, just my bag leaking! Peggy gave me a conspiratorial look.

UTI - F O!

I get up every 2 hours at night for a drink (I need more liquid because my small bowel is doing the job of my non functioning large one). Every time I wee I'm conscious that I still have a UTI contracted in the hospital month ago (which has resisted 3 antibiotics) and that having chemo will make me less able to deal with infections. Not conducive to getting back to sleep! We go to the GP tomorrow to try and get it sorted ready for the 29th.

Mmn Mulled Wine

Bit stiff from last night's minimal activity but feeling good - particularly as excruciating nightime belly pain has stopped. Guess it was the small glass of Guinness - disappointing as I had flattened it but suppose it was the yeast that did it.

Choir was fun and had mulled wine there and in the pub afterwards; never mind the Guinness.

Have devised a Cryptic Musicals Quiz to raise money for the choir. Email me or comment here if you'd like one and you can pay a £ via paypal or IOU. It's very easy but not quite as easy as this example:

M--- -- -- -- -----  St Meet Me Louis

Don't Tell Matron

Illegal activities tonight! I spent 20 minutes of Shell's 2 hour table tennis training  practising wickedly spinny serves with Martin. I'm not supposed to do any sport for a few more weeks (and I should wear a protective belt) but by then I'll be on chemo and it may make me allergic to ping pong. It wasn't vigorous exercise but it was good to hold a bat and for a little while I felt normal even though I was wearing dungarees.

Crimbo Then Chemo

I have my first chemo appointment on 29th December. It was going to be 12th January but I stuck my bottom lip out. The decision to go ahead wasn't easy - it's going to be an unpleasant 6 months with possible side effects ranging from diarrhoea through sickness and hair loss to flaking hands and feet (and death for 1 person in a hundred). It also means the stoma reversal won't happen until the treatment finishes. My immune system will be impaired so I will be out of bounds to visitors with colds, flu, cholera, STDs...  My oncologist, the magnificently named Dr Biswas, took over where Lou left off in briefing me on odds. The advantage of treatment is the chance of the cancer not returning goes up to 78% and although that's only 3% more than without chemo - I could be one of those 3 people in a hundred!

So I won't need to drink too much at new year to feel wrecked and Shell will have to continue her Domestic Goddess role for a good while ( she saved £13 with multibuy at Tesco today; great deals on cream cakes). I'm asking Santa for some of the Boxers for stoma wearers.

Lovely Stoma Nurse

Nurse Nicki sorted me out this morning. I was cutting my stoma template all wrong. I'm really moved by how sensitive and skilled so many nursing staff are - we had a really useful, uninhibited conversation while I was kneeling in front of the loo with a dribble of poo on my belly and she left me feeling good about myself.

Win, Lose and Drawers

My winning run continues as I continue to feel healthy - climbing the steps to our seats at Carrow Road (and managing half a glass of red wine last night) but Norwich's ended with a 0-2 loss to Portsmouth as they stole the game in the last 10 minutes. Will do better at Coventry next week!

We found a great story on STV; Nicola Dames designs underwear and swimwear for people with stoma bags. Her young models have had colon ops (as did she). The girls and boys wear refreshingly cool kit- no flesh coloured poly in sight and the models are fab, feisty things.

http://living.stv.tv/fashion/181714-sexy-swimwear-for-colostomy-bag-wearers/

http://www.vblush.com/default.html

Oncology

I've got an appointment to talk about chemo on Tuesday. Hope treatment can start before Christmas. I've got yet another antibiotic for the UTI - one used for treating Clap! It's a real horse pill with perceptible side effects so it should do the trick. Apart from the UTI I'm getting loads better; I no longer walk like Hercule Poirot, don't have to change the bag as often, feel stronger. Totally up for the Pompey match this afternoon in our usual seats.

Sometimes it's better not to google

The GP phoned and said the UTI is a Protozoa germ rather than a bacteria. Of course I googled straightaway and saw a list containing Gonorrhea, Syphilis and Great Pox. Another page referred to 'masturbation injury' Im really hoping these conditions were randomly thrown into my search results and can't really be contracted via a hospital catheter.

Rob and Matt popped in last night and while Matt played Ninja Fruit I exchanged notes with Rob, whose adolescence was blighted by colon ops (does that mean you had a teenage dirtbag?) Delighted to find that Rob has a J Pouch and has no problems with it. I have been google wary as far as the stoma reversal is concerned - the J pouch is there to collect poo because the tumour and radiotherapy scarring meant Mr Kapur had to cut low under the sigmoid colon - and it all sounded a little frantic and hard to manage. But Rob is always serene and dignified. Ok I can't be either of those, J Pouch or not but I feel much cheerier for having a Pouch Buddy.

Chance

As I've had cancer twice now I decided to get better at reading odds and had some poker tuition with Lou who plays successfully online and at the club in Norwich's own Reno; Anglia Square. I got a bit exhausted trying to treble bluff and won't be playing for money for a while yet.

I've ditched the fancy Dansac bags as I had two nights when I woke up  with a zeppelin swollen with methane and poo strapped to my stomach and had to walk gently but purposefully away from innocent bystanders Peggy and Shell for safe defusing. The Coloplast valves seem to be more reliable.

I feel a lot fitter this morning but I am horrified by my lack of muscle tone. It's a month since I last had table tennis training and it'll be another month  till I'm allowed to play again. The New Year work out with Martin will be about building up - not the post Christmas burning off and drying out of last year.

Visitors

Marg and Ted braved the dodgy wires of National Express (7 hr round trip from London) and took us for cake. Dr Ted was delighted with the accuracy of his early punt that no spread should mean clear lymph and said that belt and braces chemo was a good idea. Marg presented a Serve & Obey paper knife which could probably be classed as an offensive weapon - it will be treasured.

I told the Offermans that the blog has given me a little vanity value. I can check to see which countries have made hits. Of course we know Serena in New Zealand, Inga and Elaine in Iceland, Annelies and Monique in Belgium, Joy in Switzerland, Marian in Malawi and Sam in Ghana (sorry Betty - Scotland is classed by Google as part of the UK). To date the blog has also been seen in Croatia, Singapore, Russia, South Korea and USA. I must have pissed off a lot of people who simply wanted to know how long a colon is in inches.

No Label

I'm up a lot in the night rehydrating and emptying the bag but last night a lingering anxiety became a sleep wrecking revelation - I forgot to label my sample! Went to the GP yesterday to try to find out why the catheter trauma/ UTI isn't healing and I forgot to label my tube of wee. Let's help no one else did the same thing or I may be diagnosed pregnant or having prostate problems.

Hello SEAN SAVAGE! You are one of the most loyal blog fans - checking regularly for posts and dutifully relaying news to Bridie. All the more impressive as until a few months ago your computer skills were limited to playing Patience. Now Google is your oyster. Next - selling the shed contents on Ebay.

Priceless

I have identified my preferred bag (not of the Eastpak variety). Bizarrely it references a good night out - Scroobius Pip and a curry - the Dansac. With my first pack (plain brown envelope in the post) I got a card for my wallet that will get me places:

Too cold to protest

Toilet proximity anxiety and fear of being cold kept me at home while Shell and Peggy went to the Cuts Demo. Excellent coverage on both Anglia and BBC with shots of Jules, Nick ....and Peggy!

Almost had a bag disaster - the new ones do not have folded closures and you're supposed to remember to do this yourself. I noticed just in time!

Held on to a 1-2 win at Derby - a fixture we had hoped to get to but realistically the next away match might be Coventry if I can sort the TPA and fear of being cold!

Big wide world

Went to choir last night to say hi and because Stephanie's breathing exercises are handy. Lots of good wishes and good to talk to people who've come through similar stuff. Marcia brought us a Lemon Meringue and plum jam! Yum.

Chemo?

The colorectal nurse, Jane, phoned to report back on this morning's Team meeting. Mr Kapur has made a referral to an oncologist who I'll see in a fortnight to discuss whether chemo is a good idea.