It’s OK.
I’m still here.
If you’re picturing me, hunched, pale and shaking, gripping the cold bathroom porcelain with thin, white clammy fingers. Then I’m sorry to have to disappoint you, but nothing could be further from the truth. If I’ve been a bit quiet for the past few days, it’s not because I’m loitering outside Death’s door, but rather because I’ve been waiting for something even remotely newsworthy to happen. Truth is, it’s all been a bit of an anticlimax so far.
Today is day seven of chemo cycle one. After my epic seven hour drug binge at the hospital last week, we have begun to settle into a steady routine. The initially bewildering schedule of pre and post meal medications, temperature and weight measurements and the attendant paperwork have started to crystallize into a steady and predictable rhythm. I did a quick meds tally yesterday, and my daily tablet/capsule intake is an impressive 21 at the moment, although this will taper off a little as I get further into the cycle.
The Xeloda is the principle chemo drug. The one doing all the heavy lifting. The one with the big yellow CYTOTOXIC sticker on the box. (Cyto – of or relating to cells. Toxic – acting as or having the effect of a poison). All of the other little goodies are helping to manage the side-effects and other unwanted collateral damage. Half of the tabs in my daily quota are Anti-Emetics, designed to control nausea and make food more palatable. This was the bit of chemo I was least looking forward to (we’ve all seen “The Bucket List”) the prospect of spending the next four to six months making daily long-distance calls to God on the great white telephone hasn’t been exactly filling me with the will to live.
Well, in this respect at least, I seem to have dodged the bulimic bullet. I did have one Technicolour Yawn on the first morning, which was as spectacular as it was unexpected, but otherwise nothing. Better still, I’m eating completely normally, and food tastes just as good as it always has. On Saturday lunchtime, three days into treatment, I was sitting in the sunshine at a vineyard on Waiheke Island, with Jo, my lovely mum (visiting from the UK) and a our great friends Jenny and Al, tucking into smoked salmon, smoked mussels and fresh oysters washed down with the local beer. Not what I was expecting at all.
Yes, I can happily report that food is not a problem. Apart from the fucking muesli of course, which Is still just like eating shredded cardboard and toenail clippings – If I’ve been misguided all these years, and there unexpectedly turns out to be an after-life after all, I will happily eat my atheist words and bow in due deference to St.Peter – or whoever is in charge up there, just for the privilege of ritually beating that sanctimonious prick Maximilian Bircher-Benner to a bloody pulp with a length of rubber enema tubing.
Anything else to report? Well, a bit of constipation for the first few days (Total disclosure. Remember?), but that seems to have er… passed, and a spot of the mysterious Peripheral Neuropathy A.K.A. Hand & Foot Syndrome. This is a weird tenderness in the palms and bottoms of the feet caused by small amounts of the cytotoxic drug(s) leaking from the tiny capillaries at our extremities into the surrounding tissues. As long as it doesn’t get worse, it’s not a biggie. Actually, it’s not without its up-side. According to the literature, those suffering with H&FS should avoid ” washing-up and handling gardening tools.” Well, OK then. If I must.
Fatigue. This is a weird one. Some day’s it happens. Some days it doesn’t. On a good day I can carry on as normal. Follow my regular routine, which admittedly isn’t exactly punishing these days, but still reasonable active, both mentally and physically. Another day, I get to mid afternoon and suddenly crash and burn. An overwhelming weariness is drawn over me like a heavy blanket. My arms and legs become ungainly and unaccountable heavy and the urge to just sink onto the nearest bed or couch is overwhelming. It happens very quickly. a few minutes. My instinct is to fight it. To push back. My oncologist warned me that when the need to rest comes calling, resistance is futile. He’s not wrong. ‘It’s a good thing. Just give into it’ he told me. ‘Were slowly and intentionally poisoning you. There’s a war going on inside you. Your body repairs three times more quickly when you’re sleeping than when you’re awake.’
So. With your permission. I’m off for a quick nap.
***
NOTE: Only tangentially connected I know, but a couple of friends have sent me links to this beautiful and moving eulogy for Steve Jobs, by his half-sister Mona Simpson. (From The New York Times) Like many of my generation and almost anyone with creative leanings, Steve was a great personal hero, an inspirational figure who’s life book-ends the first great age of of the information revolution which continues to transform our lives for the better. He was almost solely responsible for the democratization of the tools that put art, creativity and design back into the hands of everyone who ever aspired to making something out of nothing. It’s a staggeringly good piece of writing, an eye-witness account and a refreshingly open and honest contemplation on the delicate art of living and dying.
A Sister’s Eulogy for Steve Jobs
Hi Linds,
Very heartened to hear that you are doing as well as can be expected, or perhaps I should say, much better than expected. It sounds like you had a good time when your mum visited.
Yes, I read Steve Jobs’ eulogy too, and was much moved. His last words – what on earth (or not of this earth) did he see? We shall miss the RDF…
Jenny
PS not forgotten about the home movies
I know exactly what he saw…
Man, you must rattle when you walk ! Ha! Thanks for the link to the eulogy,
it was beautiful eh?
We are spiralling into winter now and I often imagine how beautiful it must be on your
island. Very envious. Sam is arriving here in just 15 days. So excited. One good thing about
the winter darkness is the Christmas lights in town, it will be our first winter Yuletide for
many years. Glad to hear you are still enjoying your food. Order that lobster for Christmas,
“stuff” the turkey.
Bisous, T xxx
Yes, spring is definitely upon us here. Humid with showers at the moment. so everything is growing like crazy. I do envy your UK Christmas, you’re right, it’s just not the same in the southern hemisphere. It’s not out of the question that we might be comming over for a couple of weeks at Xmas or the new year, depending on what kind of shape I’m in. We just had my mum out to visit from Plymouth, and a few rash promises were made… We’ll see. Say Hi to the Big Guy when you see him, and remember us to Sam. Linds X
So pleased to read that you are tolerating the treatment so well,still sending requests upstairs, hope you don’t mind,at least they don’t do any harm and might do some good,who knows, maybe Mr Jobs? Have just read his eulogy, found it very moving, great to have such a talented sister to be able to write so movingly about him.To be honest I didn’t know anything about him,{well I am rather old}. Did you read the link to The Genius of Jobs by Walter Isaacson.I found it very interesting.
With Lots of Hugs and Kisses 0x0x0x0x0x0x0
Celia & Ian ( But he hasn’t read it.)
Hi Celia, thanks for checking in. Yes it’s all going surprisingly well so far. I’m trying hard not to do any chicken counting just yet, this is a marathon, not a sprint – but the signs are good. As for Jobs, he was a great man, although a difficult bastard by all accounts. Perfectionists tend to rub people up the wrong way I’ve found from my own experience. (Not that I’m comparing myself to him in any way.) Feel free to prey to the deity of your choice, nothing wrong with hedging your (and my) bets in these matters. I’d actually be thrilled if I turned out to be wrong about the whole thing, although if I do come face to face with a ‘maker” at some point, once I get over the apologies and embarrassment, he’d better have a pretty bloody good reason for trying to snuff me out at 50. I know it’s a crowded planet and all, but why not pick Robert Mugabe. That bastard’s 86!
Glad to hear the chemo is proving less eventful than expected. I read a recent study which indicated those who experience HFS have better results with Xeloda in fact so may your extremities continue to tingle ! I suspect Mr Mugabe is under the edict of the other team – it’s the only explanation I can imagine for the longevity of him, Pol Pot, Jo Stalin and one or two US politicians I won’t mention..