Korea

Busan

Grey, low cloud, close & damp, unlovely buildings clambering up the sides of the hills, as if Genova had been built in the 60s and 70s.  An inauspicious welcome to our holiday.  But reaching Haeundae, the air clears and gives way to a gentle breeze off the sea, the sun begins to light the endless jewels carried by the waves, and the scent of maritime pines and salt water blow away the heavy grime of Shanghai.

Familiar sights and smells resurrect pleasant old memories as we stroll through the local market.  We sit down to a cleansing bowl of handmade guksu noodles in a clear delicious broth, served by a friendly elderly couple, proud of their fare and very concerned that we don’t add too much chilli sauce and spoil their flavours. We feel renewed afterwards.

I’d forgotten about the US Army presence - there are off-duty soldiers everywhere, some of the most unsoldierly looking men you could see, wandering, beers in hand, headphones de rigeur somewhere about the head, looking for “real food”.

Shinsegae Department Store, certified as the largest in the world, full of top brands at suitably large prices and shoppers keen to show they know what’s what.  How incongruous then to see four Buddhist nuns, with their shaven heads and kind, gentle expressions, in trademark pale grey tunics topped by simple wide-brimmed straw hats, shopping for treats, probably gifts, a small expensive, immaculately wrapped parcel or two already in their grasp.

Airport Road

As we blur along the expressway towards escape, streams of pylons stretch in large corridors in all directions to the horizon, like watchmen for silent rivers of unseen energy to fuel the consumptive life of Shanghai as it spreads ever further, absorbing all land, suburbs, villages and towns in its way.  Some valiantly try to maintain an independent identity, like Songjiang which proudly proclaims its modern presence alongside its long history, but all in vain like Canute commanding the tide, as the mega urbs spill on and out.

Masseurobics

Our local massage parlour, which prides itself on a certain class and standard, performs a daily ritual, weather permitting, to drum up business and impress potential customers and neighbours.

In the evening, during rush hour, their staff form 2 lines on the pavement, the leader a little to the side to enable him to bellow instructions.

The performance lasts some 10-15 minutes and involves the team of rather thin, listless, mostly young masseuses & masseurs, all wearing a kind uniform pyjama, doing very gentle aerobics with no great enthusiasm, more like an amateur soft-shoe shuffle.

The aim, I presume, is to demonstrate how well conditioned, energetic & disciplined your massage artist is.  Adding grandeur is music loud enough to shake the leaves from the trees above, accompanied by the monotone chants & claps of the team.

A small group of onlookers lingers briefly on the pavement opposite before moving on.  By the end of a routine that isn’t quite so much spritely as geriatric, the team disperses back inside the bleak, unwelcoming doorway and Shanghai’s normal din quickly fills the void.

Citizen Activists

Neighbourhood activists we are today, congregating on a corner beneath the hideous shapes that announce the Jingan Sculpture Park.  At the start I feel a frisson of concern - how will the police react?  Dissent is barely tolerated after all.  I should not have feared, as this was a government sanctioned group that helps out in the community.

We walk in green T-shirts, some 30 of us, promoting a low carbon lifestyle by marching along our local streets and handing out leaflets & folding plastic fans to passersby.  At least our walking creates no carbon, even if we stir up some of the city’s construction dust.

Aren’t we preaching to the converted?  We might more effectively target the drivers waiting in their cars at traffic lights, though we’d be met with anything from incomprehension to ridicule at the notion of abandoning a hard won right to enjoy motorised convenience and comfort.  Walking back from an innocuous & controversy-free march, we pass a vast, gleaming new Rolls Royce, about the size of many Shanghainese people’s apartments, with beads hanging from the mirror.

It's been a while

Where have the days and months gone?  Where am I now?

Well first, back in China - we returned in mid August after 11 months away.  Can it really have been that long?  I don’t know if those were the longest or shortest months of my life - they seem to have flown by and yet stretch like an eternity looking back.  I feel as if I have lost a year of my life, though in truth I was so very much alive throughout and it was one of the most intense times I have lived, never more conscious of life and fighting to hang on to it.

So I still have my life - thank you up there.  It’s not what it was but no bad thing that.  Cancer no longer defines my life, though it did for a time.  I have to watch out for the beast coming back for another go, but I’m ready for a fight. 

Instead I have been given, or grabbed a chance, a second go perhaps at life and I know I cannot waste that.  So bit by bit, I aim to fill life with a greater consciousness of its beauty, goodness & strength and do things that I have wanted to, thought and talked about for too long, and reach an end one day with a sense of some satisfaction that I didn’t waste the gift I was given and if I am really lucky, and push myself hard, that I might just have made some small difference.

So this is my account of some of what I see, do and think from now on. And ‘Me & It’ is about my life and whatever ‘It’ happens to be on any given day, seen through the lenses of my try-again specs.

See what you think, as a favourite singer, Jake Thackray, once said.  Take what you like and discard the rest.

Cheers

Chemo days

No taste

my skin tastes different

don’t recognise food

everything’s like eating mud

sense of smell deceives me 

eating's just fuel.

Exhausted

waves of tiredness 

drop to sleep at a moment’s notice 

finished by a walk

Wake up at all hours.

Peeing for my country.

Can’t concentrate for more than 15 minutes 

feel rimbambito.

Nausea creeps up unsuspected

fear of swallowing anything

food

the tablets that are curing me

even simple life giving water...

Side aches

wound closed and healing well 

but reminds me it’s not done.

Sooka cries when she sees me down

what am I doing to her?

16 days to go, just 384 hours and then?

Freedom or doubt? 

Up to me I guess

Cruelty & release

Lost a friend to this beast this week.  David, who I’d only met online at the Macmillan Cancer Care Online Community, sadly lost his short battle with Oesophageal Cancer.   My heart goes out to his family and close friends at such a cruel time and I only hope that they take some consolation from the love and happy times they shared with him and that he has been released from pain and passed in peace.  He was a big hearted man, full of courage, wisdom, hope and wise words and he lifted me and many others with his optimism and spirit.  He welcomed me as a friend and I’ll remember his kindness with huge affection and only regret that we will not get to go on the walk through the woods we talked about.  

A bad week also saw friends lose their daughter at just 26 to another cancer.  It’s terrible to lose anyone but a child must be the worst, I can hardly imagine what her parents are going through - where do they find comfort at such wanton cruelty?  My prayers are with you.

Rest in peace David & Katie.

Chemo fug

Been back on the chemo since 2nd March, 3 cycles, nine more weeks of crap to make sure I get any lingering cancer cells out of my system as completely as  possible. 

I’ve now got through 4 weeks, and I have 5 weeks left, 35 days till the end of this treatment.  Can’t say it’s fun.  Much harder this time.  Waves of nausea for the first 4 or 5 days after each day 1 infusion that sit on you like a heavy cloak.  Nothing you can do except take the meds and wish it away.  

Ladies, I might just be getting a feel for what morning sickness is like, so my hat is off to you for handling it.  In fact I’m beginning to wonder if I am accumulating more of the maternity experience than I am naturally cut out for.  I’ve got morning, or rather all day sickness, I have cravings, my taste buds are all over the place, I’ve had a C section, or at least they cut through my abdomen, and once, long ago in Malawi, I got a sharp dose of food poisoning that left me with severe stomach cramps every few minutes for whole night that are the closest I will ever get to contractions.  I remember screaming with pain so badly that the scruffy house dogs sloped off scared and the 2 security guards outside ran off thinking I was being murdered.  OK I know, not the real thing...

I can’t concentrate on much for long, even this is an effort right now.  I get very tired and need to get some day sleep most days.  And my sense of taste has now deserted me just about completely, which is very dispiriting.  My nose leads me a merry dance along some tantalising memories of scent and taste, and then when I eat, nothing.  Or rather something like wet cardboard.  And yet Sooka tries so hard to cook me things that I’ll enjoy - I feel so ungrateful when I can’t finish, angry at the waste.

All I can do is to both receive the chemo gratefully and at the same time fight it with whatever energy I can find, if a little passively.  That means getting outside as much as possible to let fresh air clear the chemical fug.  We went to Chobham Common the other day and walked for a couple of hours in the sun, surrounded by open space, heather, birch trees, the call of birds, lizards and the amazing sweet coconut scent of beautiful yellow gorse flowers.  I got home tired but refreshed and could think beyond the chemo to the day, not so distant now, when this treatment will be over.

34 days & 23 hours from now...

Scans...

The oncologist recently talked me through my latest scans.  It’s pretty good, going to plan.  The margins of the tumour they removed were clear which is a good result.  They also took out several lymph nodes and found “involvement” in all but two, as expected though perhaps not to that extent.  The scans show a couple of remaining lymph nodes which are enlarged but he said that could just be my body reacting to post-surgery healing.  Later scans will confirm this.

It reminded me how vigilant I will need to be for any recurrence and what an insidious bugger cancer is.  How it just kicks off without announcing itself and lurks darkly doing its dirty work with impressive dedication, until one day you stumble across it as I did. If you’re lucky you find it early enough to fight back and send it packing.  Often though it’s too late, or at least late enough to have done serious damage that will leave you battling for the rest of your life.

Either way your life is no longer the same, your body is no longer only yours.  You’ve met a resourceful and determined enemy that wants you and its shadow will now be trailing you till the end of your time.

Not letting that get to you is the trick, the task, the new fight.  Not allowing this intangible, shapeless, timeless small piece of knowledge rule you, suffocate you, hijack your emotions and thoughts.  

How do I harness cancer’s dark energy and turn it back on itself?

The challenge is to live life as completely as possible, not wasting any opportunity or moment, giving whatever I can, making sure my loved ones know they are loved and sharing as much as I can, and retaining the ability to enjoy and feel that time alive is so valuable.  No regrets allowed.  That’s a great challenge to take up.

Bicycle broodings

Today was a gorgeous spring day and my first bike ride since the operation. I wasn’t sure how much I’d be able to do but it went fine, lungs and legs were good and I went further than I thought, about  4 or 5 miles in all.  That’s an important step forward for me.

Riding in the sun along backstreets, without much traffic to fight off, idle thoughts glide through the mind.  And despite the glory of day, this disease managed to tug me back to reality.  I started thinking why do I have this type of cancer?  Why not another type, an ‘easier’ one perhaps?  And I found myself doing a grim comparison, which cancer is the least undesirable type? Skin, minor organ, near the surface...

Ridiculous eh?  It’s still all cancer, trying to get a firm grip, clinging on for dear life, my dear life actually, insinuating itself unseen, biding it’s time, a chancer, a spiv looking for its break. Bastard

Baking

I baked my 1st, 2nd & 3rd carrot cakes ever. Modestly successful I can say: no. 1 & no. 2 tasted OK, 2 better than 1; they both rose though with a pronounced off-centre slope.  And no. 3, with Sue’s improved recipe, is light years better.  But not quite there yet.  Of course I have gone off the taste of carrot cake thanks to my rebellious tastebuds.

I will now keep baking, and inflicting the cakes on others, till I make the perfect carrot cake, the best in the world, one to make the gods swap their nectar for.

My next baking project is to make focaccia, but not any old stuff.  This will be the focaccia I used to eat as a child in Sestri Levante, in Liguria.  

A bread so gorgeously tasty, that it must have been made in heaven.  I intend being buried with a slice, well a few kilos actually to keep me company on the long journey to wherever.  So my quest is to recreate that so perfectly that it will transport me back to those golden, sunny childhood days and banish thoughts of chemo and cancer.  

I’ll report back.

Losing weight

I’ve lost a fair bit of weight, about 6 kilos which surprised me.  I hadn’t noticed too much, thought it was maybe a kilo or two.  I’m quite pleased really as I needed to and I’ll be able to wear a few pairs of trousers that were destined for the charity shops.  I need to be careful I don’t lose much more though, particularly with the difficulty I have with eating, as I need the weight to fight the effects of chemo.

Bit of an extreme way to lose weight this chemo/operation combination - not recommended folks...

Food, fuel and taste

I seem to be losing my sense of taste, and more worryingly my enjoyment of food.  Chemo gives you a strong metallic taste for a long time which can ruin most tastes, but more strangely I am finding a sort of revolving door of tastes, where something I ate in the morning becomes unacceptable by the afternoon, and my palate shrinks before my eyes.

Food more and more seems to be just “kirum’ (Korean for fuel) a tool for living, lacking that pleasure you find in new, startling, unfamiliar or just favourite tastes and textures.  Just combustion material for the engine inside - which of course is exactly what it is, but how dull if just that, how awful if devoid of the capacity to delight that makes life and the world we’re privileged to inhabit so special. I hope this is not it from now on. 

I’m also developing instant cravings, and I just have to eat the taste which comes into my mind there and then.  Mainly simple tastes: the other evening I was watching a movie called “Genova” with Oscar winner Colin Firth, and while they were eating I had the overwhelming urge to eat ‘spaghetti al aglio e olio’, so at 11pm there we were cooking the pasta!  Not a brilliant movie I have to say, and for me memorable only for featuring the magical Ligurian coastline where I spent so many happy summers as a child.  

Wow I can almost smell the pines and the extraordinary focaccia we’d collect fresh from the bakers every morning...  Now that’s a taste I will never lose!