Crash and burn (reprise)

Day 99 

General status update

Nausea demon: we saw in the dawn again together this morning, but the extra steroids and the Omeprazole are definitely helping – this cycle the various stomach side effects are not nearly as acute as in previous cycles. Physical and mental distress significantly decreased. Thank you again, Roma and Becky.

Despair Demon: he escaped from the airing cupboard and accompanied me to the hospital today – it didn’t go well.

Chemo Muse: she rather overdid it yesterday; even she admits that.

Fatigue/exhaustion: acute. It’s getting worse every cycle, and hitting earlier in each cycle.

Chemo Brian: I’ll be joining him on the sofa very shortly – even with the extra steroids day 5 of FEC is bad bad BAD

State of mind: unimpressive

Anxiety level (1-10): ramping up again, on all fronts.

Hair: whatever

  

Had I only retained the sense I was born with, as MamaFo has so very often been heard to say (inscrutable north Yorkshire sayings, no 79), I would have postponed my radiotherapy planning meeting at the hospital today: even with the help of extra steroids, Day 5 of the chemo cycle is not a good one on which to interact with people, especially in a hospital environment with highly skilled medical professionals intent upon performing on you yet more physically intrusive procedures with unpleasant side effects.

I thought the meeting was just to talk about the radiotherapy, which will irradiate my right breast, from where the cancer tumour was removed, in order to prevent a local reoccurrence of the cancer in the same breast –

If you had a lumpectomy without radiotherapy afterwards, there would be a 40 -50% chance of breast cancer returning in the breast; with radiotherapy, the probability of a local reoccurrence is only about 4 - 5%. So the lumpectomy allows you to save your breast, but you can’t really have it without radiotherapy as well – that’s the price you pay for not having a mastectomy and losing your whole breast. The radiotherapy, locally targeted, is thus  quite separate from the chemotherapy treatment, which is systemic and aimed at picking up any circulating tumour cells that may have already drifted into your blood system before the tumour was removed.

- but it turned out that they needed to do a scan of my breast, and draw markers on it, and make calculations as to where exactly in my breast to target the radiation, and as the very pleasant and helpful radiotherapist talked me through all this I could feel my upper lip beginning to tremble, and inside my head I was shouting No! I don’t want ANYONE DOING ANY MORE STUFF TO ME! Just leave me and my body alone now!

I managed not to cry until she went out of the room for a couple of minutes to check something, but then I completely lost it and sat there, tears streaming down my face, thinking I really can’t do any more of this, why can’t they just leave me alone for a bit now, I’m full of poison from the chemo and as soon as that stops, they’re going to nuke me and burn me with the radiation.

Yeah, I think we can say I crashed a little today, Dexys or no Dexys.

As it happened, we had to the postpone the scan, anyway, because I need to go away in early May, back to my former home on the north Aegean  coast of Turkey – an important, long pre-planned engagement involving other people, coming from the USA, organised before my cancer diagnosis. I asked the radiotherapist if the treatment could be postponed for two weeks until late May, and she said that the scan would also then need to be postponed, as 2 months ahead is too long in advance to do it. She is going to confer with my oncology consultant about the delay, and get back to me.

I hope the oncologist is going to be OK with this – until a couple of days ago, I had thought I was just going to have to cancel the whole thing, that I wouldn’t be strong enough to do a big trip so soon after chemo, but then this weekend I thought ‘Sod it – I’ve had six months of hell, of my life totally taken over by the cancer, of belonging to the hospital – surely I can have just this two weeks back for myself?’

I know I’m not thinking very straight at the moment – a weekend of steroid mania, now a big emotional collapse – but I just quite desperately need a break now, after the chemo finishes, and since this trip had been planned long before the cancer struck, it seems right to go ahead with it if I possibly can.

In Ayvalik, where May is warm and sunny, I will be able to sit in the courtyard at the Camel Barn, with a cat dozing on my lap, and get something of myself back. This image has been in my mind again and again over the last few months as I have tried to escape mentally from what has been happening to me by visualising happier places: my old Lloyd loom chair  under the olive tree, the sun, the cat, the soft pink Sarimsakli stone of the the old stone walls of the barn.

picture not posed by a model - that is my actual cat, Ollie, currently being very well cared for by a friend

The Aegean spring is the thing I miss most about my old life - it is incomparable.  A walk through the olive groves filled with wild flowers would do me more good right now than all the chemotherapy and radiotherapy in the world....

I do hope they’ll let me go. 

How to build a very large and perfectly rhomboid chimney

A Day on the Sofa With Chemo Brian

Day 27:  

General status update

Hair: Have given it an extra day in the snood; we both needed to rest today. Will wash it tomorrow and see if it starts falling out.

Nausea demon: Still engaged in fierce hand-to-hand combat with the meds; he was winning in the early morning, but the meds have now got him cornered, and he has gone to ground to regroup and plan the next surge when they’re not looking. But they’re on 24 hour watch now- ALL of them.

Chemo Muse: Is she feeling slightly guilty after refusing to allow me to stop last night? You’re kidding. ‘I got the job done. You couldn’t have coped without me’. Annoying, but, true.

Paranoia Demon: on hold. Am too tired and sick to be paranoid as well, just now.

Chemo Brian: He made room for me on the sofa, and we spent most of the day there together, resting.

 

Sleep, lack of: At 1.45am last night, I finally had the good sense to take a Lorazepam. Sorted.

Anxiety level (1-10): see Paranoia

State of mind: Dopey. V. relieved to have got all the anti-nausea meds.

 

After yesterday’s drama and excitement, was forced to take my first ever Chemo sofa day, snuggled up with Chemo Brian. There are worse ways to spend a day.

Normal service will be resumed tomorrow, but in the meantime, for your edification and delight, I am going to show you a series of photographs showing how the chimney in the Camel Barn Library, my former home on the north Aegean coast of Turkey, was constructed, almost single-handedly, by a very talented Kurdish stonemason called Apo. He comes from an ancient stone city called Mardin, high on a hill overlooking the Mesopotamian plain in the far south east of Turkey, close to the Syrian border. The people of Mardin call the Mesopotamian plain 'The Ocean' , and you can see why:

 

 

 

The men of Mardin have been famous for being good with stone, and brickwork, for thousands of years. So, here's how it's done, using old fashioned plumb-lines, and pieces of string:

 

 

 

 

And then, a few months later:

 

 

Home, sweet home...

 

Keeping the home fires burning...

Day 17

General status update

Hair: No change

Nausea demon: Apparently, he has ISSUES (according to the Chemo Muse, who is the only person he talks to, now that he has stopped talking to me). But she won’t tell me what they are, and he’s not talking to me. Excellent..

Chemo Muse: Also getting a bit stroppy, now that I keep knocking her out with Lorazepam. She regards this as thoroughly unsporting behaviour. 

Sleep, lack of: Slowly being remedied – hope to catch up before the second chemo cycle starts next week. 

Anxiety level (1-10): Anxiety suspended for the Christmas Holiday. 

State of mind: Christmassy, and happy; happy Christmassy, even.

 

For family reasons today, rather than yesterday, was deemed Christmas Day for R and me here in Gurkha Towers... 

We live in a flat in an old mansion block in Hammersmith, the security staff of which consists entirely of ex-members of the Brigade of Gurhkas who, as any fule know, are some of the world's most fearsome warriors.  I cannot tell you how thrilled I was when, shortly after moving into R's flat, I remarked upon the fact that all the guys on the desk seemed to be Korean, and wondered why that should be, and R told me that they were in fact Nepalese, and ex-Gurhkas to a man. Yes, we are guarded 24 hours a day by trained killers - how good is that? It's rumoured that they have a shrine to Joanna Lumley somewhere in the basement, but that may just be an urban myth.

... and hence was also deemed a Blog Holiday, as we had other, Christmassy things to do. So I will just leave you with a few images of my life, as it was two years ago, and as it is now.

Aegean winters can be quite cold, and wood is by far the cheapest fuel, usually burned in sobas - wood burning stoves. In Ayvalik, where I lived, the wood was delivered by the ton - by horse and cart. I would go to the wood yard, pay for the wood, wait while it was loaded, then lead the woodman and his horse and cart back through the labyrinth of narrow cobbled streets to the Camel Barn.

 

The wood was then stacked in a neat pile in the courtyard, usually with the help of some  little boys living nearby who, mysteriously, seemed to love carrying bits of wood about above all other things..

 

 

Inside the camel barn is a big open fireplace topped by an enormous seven metre high rhomboid chimney, constructed by an excellent Kurdish stonemason called Apo, when the barn was being restored. And through the cold months of January and February I would make a big log fire every night,

 

 

 much to the delight of my dog Freddie, and cats Flossie, Layla and Ollie.

 

  At the other end of the barn, which is about 10 metres long, I installed a big cast-iron 'soba', much more fuel-efficient than the open fire, under which Ollie loved to lie:

 

Now that I’m living back in London again, on the fourth floor of a block of flats, in a smokeless zone, log fires are no longer an option. I miss them enormously. However, the other day I found a really nifty substitute, outrageously kitsch, in quite atrocious taste, no doubt, but I really couldn’t give a monkey’s – this DVD was one of the things R found in his Christmas stocking this morning, but if I’m honest, I really bought it for me:

 

 

It’s silly, but it’s lovely, and psychologically calming (it even has a sound track of authentic log fire spitting and crackling noises), and it takes me back to my Camel Barn, which I won’t be able to visit again in reality for some time (nb Freddie and the cats are still in residence, being looked after by friends who are Camel Barn- and animal-sitting on a long term basis).

Belatedly, I’d like to wish you all a very Merry Christmas – thank you for reading the blog, and I hope you’ll continue to do so over the next few months, until the chemo is finally done.

Of all the timelines in all the Twitterverse, he walks into mine…

Day 13: Intermezzo - a brief romantic interlude.

General status update:

Hair: no change

Nausea Demon: Quiet, as he’s busy finalising his choice of Open University course – he’s narrowed it down to either a Diploma in Counselling or a course in ‘Health and Social Care’.  Go figure.

Chemo Muse: channelling her Inner Whirling Dervish. It’s frightening.

Heightened sense of smell: red wine, one of my favourite things in the world, now smells like vinegar. I no longer have any desire to drink it. This makes me want to weep.

Skin: Getting very dry, and a bit sore. By the time the sixth dose of chemo comes around, I will have completed my metamorphosis  into a Komodo Dragon Giant Lizard. Eat your heart out, Franz Kafka.

Anxiety (0-10): Yea, though I walk through the valley of the shadow of death, I will fear no evil - and that is all down to Lorazepam, the Lord’s Own high-potency, 3-hydroxy benzodiazepine drug.

State of mind: On standby. Please don't pull the plug out from the wall.
 

 Once upon a time or, more precisely, one bright summer’s morning in July 2010, a woman called Betty was finding ways not to do the thing that she knew she ought to be doing, which was writing. Betty (who lived by the English seaside in a town called Whitstable, famous for oysters)

had a contract with a publisher, and an overdue deadline, and she needed to concentrate on finishing the chapter she was writing, in the worst possible way. So, not unsurprisingly, she was playing Spider Solitaire and letting herself be distracted by Twitter.

At exactly the same moment two other people, one in a recently restored old camel barn on the north Aegean coast of Turkey....

 the other in an office in a university in London,

 were doing much the same thing: namely, anything at all to avoid applying themselves to the task before them that urgently needed doing. 

At 11.43 am Betty realised how much of the morning she had wasted, and observed sadly to the Twitterverse:

@52Betty Procrastination is the thief of time, and he has STOLEN my entire morning.

 Her two fellow procrastinators - both acquainted with Betty, but not with each other - smiled with fellow feeling when, simultaneously, 2000 miles apart, they read her words; they both then replied to her, as follows:

@carolinefo You said it, @52betty. I just looked away for a moment, and he snatched the morning away right from under my nose.

@richardethics The little bugger’s been round here and pinched most of mine, too, @52betty.

Back in Whitstable Betty laughed, and tweeted again:

@52Betty Do you think the 3 of us should start the Official Twitter Procrastinators Club, @carolinefo and @richardethics?

And that was the moment, the precise instant, when R and I appeared on each other’s timelines, and became aware of each other’s existence for the first time. We owe it all to Twitter and to @52Betty, long may she thrive and prosper.

Whenever anyone asks me how R and I met, I never hesitate, stumble, blush or dissemble; I never look shifty and evasive, or mutter something vague about how we were introduced by a mutual friend.

No, I say it loud and sing it proud:

‘We met on Twitter, actually – during a discussion about procrastination.’

 

 

nb The @richardethics Twitter account is no longer extant; R tweets now with a different Twitter name.

 

Here’s one I prepared earlier…

Day 8

General Status update

Hair: looks appalling – no change there, then - but not falling out yet

Nausea Demon: Has settled in nicely, and is currently filling out his electoral registration form. He says ‘hi’
Fingertips: still numb
Chemo brain incidents: 1 (maybe, I'm not sure)
Anxiety level (1-10): much greater since failing to get a response from the Chemo 24 hour emergency help-line
State of mind: Gone to my happy place – back in about 17 weeks

 

 

I vowed to myself that I was going to make a post on this blog every day for the next 100 days, if it killed me: it’s one way of wresting a vestige of control out of a situation over which I have essentially no control whatsoever. And by post I mean what I would call a ‘proper’ post: something which contains information and/ or comment of some kind, and contributes to the narrative structure for this story that has been developing in my mind over the last week or so.

Today, though, that is beyond me – I’m so weakened, physically and psychologically, by the nausea that there is no chance of being able to write a sustained piece of prose, and I need to stop and rest. My oncologist has prescribed more, and different, anti-emetic and other meds which I will get this evening; R is going to pick them up from the hospital on his way home.

 I hope that tomorrow I will be able to get a grip and continue, but in the meantime I am going to post a link to something I wrote earlier, when I was living in my Camel Barn Library, and writing about my love affair with Ayvalik in particular, and Asia Minor in general; if nothing else, this piece will give you information of which you were almost certainly not previously aware about the long and distinguished history of yogurt, and its centrality in Turkish culture. To understand modern Turkey in its historical context, you really need to understand yogurt.  

It’s called  'Entertaining angels unawares...'

p.s. Many apologies to those of you who have already read this, and may be less than allured by the thought of revisiting the fascinating history of yogurt, which lacks the immediate drama of cancer treatment. I hope to resume posting as normal tomorrow. 

I swam, and I swam, right over the dam...

Day 5

 

General status update 

Nausea: continuous, all pervading, vile, but controlled. Just about.

Hair: nice and shiny and, more to the point, still attached.

Anxiety level (1-10): will the nausea ever abate, and when will the other side effects start to kick in? WHEN??

State of mind: quite chipper, considering. I got TWO parcels this morning. And I’m losing weight. Obvs.

 

 It came as a huge surprise to me recently to discover that the famous Charing Cross Hospital is not located in Charing Cross, as one might reasonably expect, but here in Hammersmith, on the Fulham Palace Road.
 

Who knew?

 This solved a mystery that had puzzled me many years ago when, shortly after graduating from Oxford, I was working in my first, quite dementedly inappropriate, career as a corporate banker at Citibank, in an office near to Charing Cross. I knew that the hospital must be somewhere in the vicinity, but however many streets I wandered down in my all-too-short lunch hours, I never seemed to come across it. Now I know why.

 

My first introduction to the hospital earlier this year was not as a patient, however, but as a swimmer. I am useless at sport and have tried, and failed, at various ways of keeping fit, including running, which served only to ruin my left knee, and gyms, which always made me feel deeply oppressed by their sweaty, airless claustrophobia, the endless hamster-wheel futility of the stationary bikes, and all the hyper-fit, effortlessly skinny young persons in skin tight lycra constantly checking out themselves, and occasionally, others, in the wall to wall Mirrors of Shame. Been there, done that, wasted countless hundreds of pounds on very expensive and highly under-utilised gym subscriptions.

 So, in the end, I just walked. And very enjoyable it was, too.

Before my return to London last year, I had been living for some time in a converted camel barn, in a small town called Ayvalik, on the north Aegean coast of Turkey. There, I would rise early to avoid the summer heat and, just as dawn was breaking, walk with my dog Freddie (a street dog who turned up one day and simply refused to go away) up into the pine covered hills that surround the town.

 

 

In the spring, when it was cooler, we would trek for miles over the hills to secret places where no one else ever seemed to go (the Turks aren’t great walkers, as a nation), and find acres of wild flower meadows -

 

 

 

 

and spectacular hilltop views over the Aegean towards Lesbos, (which lies just off-shore, despite being Greek).

 

 

In winter we would collect kindling, and pine cones, for sweet-scented fires in the Camel Barn. It was wonderful. And great exercise.

You can’t really do any of that in Hammersmith, unfortunately, although I did my best with daily treks along the Thames towpath from Hammersmith Bridge to Barnes Bridge and back, which is about 4 miles; being by the river also gives you access to a feeling of open space and fresh air otherwise difficult to find in west London, although it’s a pity you first have to negotiate crossing several major west London arterial traffic flows just to get to the river from where we live.

Anyway, that problem became moot earlier this year when I started to experience pain in one of my feet whilst walking. I went to the doctor, expecting a magic and instant cure, as you do, and was more than a little miffed when he suggested it was just a touch of arthritis, the kind of normal wear and tear to be expected at my age (WHAT?!?!?) He suggested taking some paracetamol. It didn’t help much, so an alternative form of exercise needed to be found, fast, before I expanded to a size where I would require my own postcode. I was casting round desperately to find some other form of exercise that would not either injure me or bore me to death, when I suddenly thought of swimming. Easy on the joints, pleasant, and extremely good for you in general. I hadn’t swum for years, but was reasonably proficient as a child. Sorted.

I asked my partner R, a long time resident of the area, if there was anywhere convenient nearby to swim. The reason R lives in Hammersmith is because he used to be Reader in Medical Ethics at Imperial College Medical School, which is based at the Charing Cross Hospital - although he has long since moved on to full professorial glory elsewhere. But because of this he knew about the staff sports club at Charing Cross, also open to the public, which includes a tidily sized 25 metre swimming pool.

The very next day I walked down the Fulham Palace Road to the hospital – a pleasant, although traffic-haunted walk of about 15 minutes - and joined the sports club.

And then I swam, dear readers, I swam and I swam and I SWAM.

Quite unexpectedly, I found myself to be a natural long-distance swimmer.

What I have always thought of as my freakishly wide shoulders, and concomitant good upper body strength, enable me to get in the pool and just keep on swimming for considerable distances, without any difficulty at all. I’m not particularly speedy, and I’m never going to win any races, but I can keep going on, and on, and not feel too tired at the end of it.

This was both a revelation, and an absolute joy. The first time I got in the pool I swam forty lengths – a kilometre – and the second time 64 lengths – a mile. Swimming induces me in a feeling of meditative calm, as I move smoothly though the water, feeling it wash over and around me in a liquid blue trance.

I enjoy swimming so much I suspect that in a previous life I may well have been a trout.

As I spent more and more time in the pool, I started recording my total distance swum, so that I could imagine I was swimming the English Channel, which at its narrowest is about 18 miles wide. Over the course of this summer I got, notionally at least, to Calais, and started on the way back. By the end of August I was up to about 24 miles, and still going strong. By this time I was feeling a little confined by the pool and wondering about venturing into the wild, by way of the Serpentine, or perhaps the Hampstead ponds. I was also beginning to develop a possibly over-ambitious plan to swim the Hellespont, famed in myth and legend,where Leander and later Lord Byron swam.

The Hellespont can be found on the narrow watery divide between Europe and Asia, on the Bosphorus, a fast-flowing channel of water that runs from the Black Sea down to the Mediterranean, splitting the city of Istanbul in two along the way. One of the busiest shipping lanes in the world, the Bosphorus is shut down for a few hours once every year on August 31st, to allow a group of lunatic swimmers to take part in the Hellespont race, swimming the couple of miles from Europe to Asia through vicious currents and swarms of stinging jellyfish.

That might have been a swim too far, but the idea was enticing, and I continued to dream my aqueous dreams of swimming in open waters. At the end of the summer, however, just as August was shading into September, something happened, down at the pool. I was in the shower, soaping off the chlorine after a particularly energetic 2 mile swim, and feeling pretty much as healthy and glowing and virtuously exercised as it was possible for me to feel, when I noticed something odd.

There was a lump, on the upper, inner part of my right breast, quite high up, and close to the skin. Not huge, but Very Definitely There. There was a lump in my breast.

And what was my first thought on discovering that lump in my breast, what was the very first thing that came into my mind?

‘How weird is that? Doing all this swimming is causing me to develop muscles in my breast..’

Ah, dream on, pre-cancer and pre-chemo Caroline, dream on.

Delude yourself - while you still can.

 

What's love got to do with it?

Day Two

General status update:
Side effects: none as yet, but check back this evening
Hair: still attached (see above)
Anxiety level (scale of 1-10): has expanded into a huge Black Hole, and is threatening to swallow up the Entire Universe.
State of mind: On standby - retreated into protective self-induced coma
 

What’s love got to do with it?

 
EVERYTHING.

Love came to find me, quite unexpectedly, in my remote Aegean idyll.

 Love, via the unlikely medium of Twitter, came knocking at the door of the Camel Barn Library, and refused to go away. 

Love dragged me back to London, kicking and screaming, and deposited me in a mansion block in Hammersmith. 
 

And Love took a Very Dim View Indeed when the Grim Reaper came to call, and I expressed my intention of going off meekly into the sunset, hand in hand with the tall skinny dude with the black hood and the HUMONGOUS scythe. 
 

Love wasn’t having ANY OF IT. 

Love said ‘You are DOING THE CHEMO. You have a responsibility to me, now. You are going to do whatever it takes to increase your chances of staying here, and growing old with me. The chemo will be horrible, but it won’t kill you – but if the cancer comes back, it almost certainly will. GET A GRIP’. 

Love, unfortunately, has an override function: passion trumps reason, every time.

T’was ever thus.

Love has got a lot to bloody well answer for, in my opinion.