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).