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!?).