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...