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.