Oh, Magnificent Moth

Look who I found on my front doorstep.

Lily’s Stress Reduction Programme: Day 2

Fitness: I went to Siobhan’s wonderful yoga class and stood on my head for a while.

Friends: Watched football with Ben.

Flaking: Had an afternoon nap.

Things I got for free today: A cup of tea and a biscuit after yoga class. As I was paying for my organic veggies the manager of Daylesford’s Organics asked me “do you like mustard?” When I replied, “yes, I love mustard” he presented me with three jars of posh mustard, for free.

Lily’s Stress Reduction Programme: Day 1

Singing: Daisy knocks on the door. It seems like ages since we sang together. That’s because it has been ages. I flick the kettle on, load the cd and pretty soon we are leaping around the living room warbling scales and arpeggios like a couple of nightingales.

Food: For lunch I visit the Rainforest Café. It opened at Urban Bliss, Portobello Road, whilst I was out of the country and sells fresh, home made raw food.

Friends: Sheldon called from the fishmonger’s. “Salmon or halibut, Lily?” He brings fresh halibut and I bake it with olive oil and lime juice. Ben, Sheldon and I watch Holland beat Uruguay (poetic justice).

Things I got for free today: A singing lesson. A sublime, bespoke scent.

Aromatherapy

I have come to visit my friend Celia Lyttelton. Celia wrote a wonderful book called The Scent Trail - A Journey of the Senses. In it she tells the tale of her travels to exotic places to discover the origins and the histories of the ingredients of her own perfume.

Amongst the many revolting side effects of chemotherapy are nausea, mouth and tongue ulcers and a metallic taste in one’s mouth. Eating food becomes a bit of a chore. Lovely smells can be a refuge. Whilst I was having chemo the pleasure of inhaling a scented candle or soaking in a tub laced with herbal bath milk was heightened.

Aroma-Chology is some kind of study of the psychological effects of smells. It seems that pretty much every right-minded person adores the aroma of coffee and abhors the stink of burning hair. But between those extremes of the olfactory spectrum lie forests, fields and oceans of subtle smells. According to the website of the Sense of Smell Institute, the average human can recognise about 10,000 different smells. Our reactions to scent seem to be highly individualistic. They are tied up with our memories, our hormones, our age and maybe our body chemistry. Nobody really knows why one smell will raise our spirits and another have us reaching for the razor blades.

Anyway, Celia has offered me an astounding gift. She is going to make me my own bespoke scent.

We sit at a small table in the glassed-in balcony of a high-ceilinged Notting Hill flat. Outside the window a large orange butterfly dries its newborn wings in the sunshine. Several black boxes are stacked on the table amongst the toy cars, coffee cups and piles of bills. Celia opens the boxes to reveal hundreds of small bottles with hand-written paper labels. Each of these contains a pure scent. The little sunroom suddenly seems to me like a treasure cave. These tiny phials have the mystique of rare and magic potions. And indeed, some of the extracts take many years to produce whilst others are more valuable than gold. The scents are organised into different families, for example: summer flowers; greens; leathers; gourmands; powders and so on. Celia produces a bundle of white paper strips. She dips the strips one at a time into the scent bottles and begins presenting me with tiny aromatic morsels.

I had imagined that I would just love them all and be completely unable to decide which smells had meaning for me, or what might work with what. I was surprised to discover that I have quite a discerning nose. The very first smell that Celia presents me with is red carnation. I reject it straight away. “Too soapy,” I declare. Interesting because normally I like the smell of carnations. As we work swiftly through the bottles I find myself expertly dividing the perfumed strips into ‘yes’ and ‘no’ groups. I can’t quite tell you why but this is turning out to be the most joyful thing I have done for a long time. What started out as an interesting exercise has grabbed my heart. Next I begin to reduce the ‘yes’ group by a process of elimination.

After a couple of hours we have arrived at the definitive five smells that float my boat. The formula is top-secret so I can’t tell you what they are. How do I know that these are the scents for me? It is hard to say. Smelling them produces a primal response. I feel all at once excited, warm, sexy, free, alive and at peace. It’s the feeling of being tucked up in bed whilst a wild storm lashes at the windows and it’s the feeling of lying on warm sand as a soft breeze strokes my body. Celia adds just two drops of each to a small puddle of wheat-germ oil that lies in the bottom of an antique porcelain bowl. She presents me with the bowl. I take a deep breath and I am repelled. The perfume is sickly, cloying, sweet and overwhelming. “Oh no,” I say, “I’ve got it all wrong. Those don’t work together at all.” I’m crestfallen.

But Celia is not daunted “It just needs one more ingredient,” she advises me, “what do you think it should be?” I’m fascinated to find that I immediately know which box I want to go to. “Something green,” I say. My fingers hover around the box, picking up and putting down bottles until I draw out one labelled cut grass. I dip in a paper strip and take a sniff. Guess what it smells like – exactly. “I think this is the one.” Celia adds two drops of cut grass to the bowl and swirls it in. I bend my head to the bowl and breathe in the fumes. My perfume has magically transformed from nauseating to mesmerising. I inhale again. “Oh my goodness, Celia, this is sublime. It’s as if the cut grass has just gathered all the other smells up in its arms and made them dance together. It works.”

“We have to give it a name,” says Celia. “It reminds me of a meadow.” I say, “It’s a place that I visualise in my Yoga Nidra. In my mind I lie in a meadow on the edge of a cliff, overlooking the sea. There is a stream running through the meadow. Beside the stream is a beautiful Indian Bean Tree. Under the tree is a large, flat rock. I lie in the meadow and see wildflowers and long grasses quivering all around me.” We look up at the wall. Hanging there is a small painting of a field. The title of the painting is: Elysian Fields Seen From the Spring of Helicon. “Google it!” cries Celia.

Here is what we learned. Helicon is a mountain in Greece. In Greek mythology, on Mount Helicon were two springs, sacred to the muses. The Hippocrene spring burst forth when Pegasus struck its hoof on a rock. From Wikipedia: ...the poet Hesiod sang how in his youth he had pastured his sheep on the slopes of Helicon where Eros and the Muses already had sanctuaries and a dancing-ground near the summit, where "their pounding feet awaken desire". There the Muses inspired him and he began to sing of the origins of the gods. Thus Helicon became an emblem of poetical inspiration.

So we christened my scent ‘Helicon’, although I still reserve the right to change the name.

Celia diluted the twelve drops of pure scent with enough base oil to fill a tiny vial. It is now sitting in my fridge where it has to stay for a week to mature. That miniscule bottle holds no more than a couple of teaspoons full of perfume but every time I take the lid off it I am transported, enraptured, to a meadow by a spring on the edge of my imaginary Mount Helicon.

Between the Devil and the Deep Blue Sea

On the news: Depression increases the risk of dementia. The researchers are not sure why but think it may be linked to the amount of stress hormones released by the body when we are depressed.

On this blog I recently wrote a reply to a reader who spoke of committing suicide. I talked about how, for me, the loss of hope is more distressing than the fear of death. And that is what I have been grappling with. Even though the surgery was shocking, the chemotherapy was hideously debilitating and the radiotherapy was weirdly frightening, throughout all of that time I maintained a fundamentally optimistic position. Deep down I believed that I would get through this and put it all behind me. I was unshakeably convinced that breast cancer would be an episode in my life, that it would not be my life. When Nick betrayed and abandoned me that all changed. I felt that I could not trust my own judgement. “If I was so wrong about Nick, what else am I wrong about?” I ask myself. Everything that I had believed in has been undermined, including my belief that I will get well.

I’ve heard depression described as sadness and grief that goes on for a long time. If that is the cast then I am experiencing depression. The headshrinkers call it ‘reactive’ rather than ‘clinical’ but I wonder if the risks are the same?

This is a worry. If it ever came down to a straight choice between dying of cancer and living out my days with Alzheimer’s disease, I would take the cancer every day of the week.

So, enough of this depression. Starting from today I will institute Lily's personal stress-reduction programme and report the results right here on this blog.

Where There Is a Will

You may recall a year or so ago, back when I was first diagnosed, Nick and I were rushing around Harley Street getting scans and generally trying to make sense of it all and, between surgeries, Nick asked me if I had made a will.

I’ve been avoiding that question ever since. I know it makes sense but making a will just never quite seems to get to the top of my list of priorities. I did go to WH Smith and buy a ready-made-do-it-yourself will kit. It sat amidst the pile of papers on my table for months. Every time I caught a glimpse of it my heart sank.

I took it to Australia. I figured that, since it was his idea in the first place, Nick would be kind enough to hold my hand whilst I filled it out. Ha! After that the sight of the damned thing distressed me even more. It became a physical symbol of just how on my own I am.

But I couldn’t in good conscience just chuck it out. I mean, every sensible person has a will don’t they? Especially those sensible people who have had a potentially fatal illness. So I packed it in my suitcase and flew it all the way back to London. I shuffled it back in amongst all the other difficult to deal with documents on the table.

Today I came across Gloss Legal, an online will making service. It is so simple, a matter of filling out a straightforward step-by-step form. First off they ask you to name your executors. They ask if you have any particular items that you would like to leave to particular people. I have quite a few paintings and photographs that I know some members of my family will like. Then it asks if you want to make any cash gifts to charities or specific people. Next it asks you to divvy up the remainder of your estate, naming the beneficiaries and ascribing the percentage of your loot that they will receive. Finally it asks if you would like to be buried or cremated and if you hanker for any special funeral arrangements. Obviously, since my friend’s funeral last week, this has been consuming my thoughts. I had already mentally composed a list of songs.

The great thing is that it is all saved as one goes along. I could go back and add or change things as they occurred to me. The website claims it will take 20 minutes and cost £39. In the end it took about an hour-and-a-half and cost £69. That is still a small price to pay to get one particularly gnarly problem dealt with.

It Was a Robbery

On behalf of my fellow Ghanaians everywhere: "Booooooooo!"

Funeral for a Friend

This sunny London morning, in a narrow Soho street, two magnificent dusky horses with black ostrich plumes on their heads stand harnessed to a glass carriage. The horses snort softly and occasionally toss their flowing manes. A quiet crowd is gathered here, mostly dressed in black with the occasional flash of scarlet or hot pink. We chat in subdued tones. Inside the carriage my friend lies in his coffin. The coffin is made of cardboard, covered with red sparkly paper, decorated with ruby crystals and paper flowers. An outlandishly huge, black top hat wobbles on the roof of the carriage.

The funeral cortège sets off and the crowd fall in behind. Following the carriage, we process slowly around the streets of Soho for about an hour in our high heels until our feet nearly drop off. Eventually we arrive at St James’s church, Piccadilly. The church is already packed to the rafters. After everyone has squeezed onto a pew the coffin is carried in. The service is moving, joyful and elegant. Everything about the funeral is perfect: the glass carriage; the sunflowers; the readings and tributes; the press photographers; the eye-catching outfits; the circus atmosphere. Of course the one person who would have enjoyed it the most is not here to share the experience. At the end my friend’s coffin is carried out to the music of his beloved Marc Bolan singing 20^th Century Boy.

It is unutterably sad to see a coffin carried away for the last time and to know that a kind, infuriating, contrary, funny, morose, witty, messed-up, sweet human lies inside it, his body about to be burned to ashes.

The mourners regroup in the churchyard for drinks. Later the wake moves to a club in Soho where there is more chatting and the showing of a funny and touching film.

At five p.m. the wake is still going strong but I have to leave. I have an appointment with my therapist.

I sit on the therapist’s couch and cry for an hour. My friend wasn’t my lover, or my brother. He was not the most important person in my life, nor I in his. But he was my friend, for better or worse. His death is yet another loss.

My friend didn’t please everybody in this world. He didn’t try to. What I can say for certain is this: for all his foibles, he was loved.

Black Cabbage Pasta (no cheese)

This is adapted from a recipe that my cousin Gaby taught me, many years ago in Tuscany. I think of her whenever I cook it, which is often because it is so delicious.


Use as many organic ingredients as possible.

A bunch of Cavolo Nero or Kale

At least three cloves of garlic

Half a red chilli or a pinch of dried chilli flakes

A big handful of flat-leaf parsley

Splash of fish sauce

Half a tin of salted anchovies

Plenty of extra virgin olive oil

A fistful of pine nuts

Pasta of your choice (I think this sauce works well with penne)

With a big knife, shred the Cavolo Nero or kale into strips about the width of a matchstick. If the stalks are tough and stringy, cut them away from the leaves before shredding (you can keep the tough stalks and put them in the juice extractor as part of your next green juice). If the stalks are tender, simply shred them along with the leaves.

Put a pan of salted water on to boil for the pasta.

Pour a good splosh of olive oil (at least three or four tablespoons) into a heavy based saucepan and add the shredded leaves. Put the lid on and place the pan on a very low heat. The aim is to sweat the kale, rather than to fry it. After about five minutes, turn the leaves and put the lid back on. Five minutes late, turn them again.

Put the pasta into the other pan, which should now be full of boiling water.

Finely chop the garlic and de-seeded chilli. Add them to the leaves along with a couple of shakes of fish sauce and the anchovies. Put the lid back on.

Toast the pine nuts in a dry frying pan, shaking them all the time until they are golden brown.

Coarsely chop the parsley.

Take the lid off the kale. By now your leaves should have cooked down into a rich green mass. The garlic will be soft and translucent and the anchovies will have melted away. Add more olive oil, stirring all the time. Keep slowly adding oil and stirring until the sauce doesn’t seem to absorbing the oil anymore. You will probably have added about a quarter of a cup of olive oil to the sauce by now. Throw in the parsley, stir it through and put the lid back on the pan.

Drain the pasta. Mix the sauce through the pasta. Serve it up and top each bowl with a generous sprinkling of toasted pine nuts.

Whatever Gets You Through the Night

Moon Over Sommers Bay - by Mum

Dear Anonymous,


I have been thinking for several hours about how to reply to your comment without sounding glib.

It seems to me that feelings of despair are an inalienable part of the cancer journey. With a diagnosis of cancer, each of us must consider the very real possibility of an early death. But although I find it scary to contemplate, death does not terrify me. What I have found devastating is the loss of hope.

At the time that I was diagnosed I was happier that I had ever been. I was in a wonderful new relationship with Nick but, more than that, I had reached a point in my life where I felt relaxed and confident. For the first time, I truly knew myself. Through the surgery and all the hideous treatments I always imagined myself returning to love and laughter with Nick, to recovering and getting back to my optimistic, beautiful life that was so rudely interrupted by cancer.

It wasn’t until Nick left me that I lost hope. I started to believe that God was out to punish me; that the cancer would slowly strip me of everything. It had taken my breast, my hair and my femininity. As a result, my lover had left me. My emotional resilience was destroyed. With that I felt that I would be unable to recover my physical health, I would relapse, my life would become an endless cycle of suffering, friends would find it too difficult to stay and so would slowly turn their backs on me, just as Nick had. Ultimately I would die alone.

It is so easy to catastrophise because, whichever way you look at it, cancer is something of a catastrophe. And it brings a particularly insidious fear: “I might return,” it whispers, “and you can never know why or when.”


In the face of all this, to long for oblivion sometimes seems the sane and sensible choice.

But my life up until now has been filled with what writers of self-help books euphemistically call ‘opportunities for growth.’ And so I have tried to put into action many of the survival skills that I have learned along the way. These are some of the things that help me. Maybe they will help you too.

When I was younger I was paralysed. At that time I learned the power of creative visualisation. I would picture myself lying in a meadow of wild flowers on a high cliff overlooking the sea. I would feel the breeze on my body. I would hear the tinkling water flowing in a nearby stream. I would watch the clouds drift white above me. I would create a sensuous, colour-drenched world in my head and then put myself in it. I experienced the very real power of prayer and meditation. I lay for months, completely immobile on a life-support machine, and marvelled as every day miracles happened all around me.

Now I do creative visualisation and positive affirmations as part of a practise called Yoga Nidra. There are many cds available that guide you through the process. I highly recommend buying one. I wrote more about Yoga Nidra in a post dated 17^th November 2009.

Through being in a twelve-step programme I have learned the value of talking to other people and sharing honestly what is occurring in my life and how I am feeling from day-to-day. I am very privileged to have this ongoing support available to me. I would encourage anyone to join a twelve-step programme if you can – and let’s face it there are twelve-step programmes for just about everything these days*. If that is not appropriate then there are many cancer support groups run by charities. And if those are too far away or too depressing or just too irritating then what’s to stop us from setting up our own support group? I think I will write a separate post about how to do that.

Spending time in rehabs and on psychotherapists’ couches has taught me how to identify and feel my feelings rather than suppress them. This can be tricky. It sometimes involves crying in public places. But that never killed me or anyone else. And it’s not just the feelings of sadness, anger and loneliness that I need to feel but also joy and love. I allow myself to really love my friends and my family, my neighbours and people on the bus. That sounds simple but it takes bottle. After all, if I love people they might reject me or let me down. Yeah! Laugh, cry, just get it off your chest. I see a psychotherapist every week and unburden myself of all my craziest, darkest, most shaming thoughts.

Writing each morning – whether it’s a diary, a blog post, a poem or simply a loony stream of consciousness – gets some of my obsessive thoughts out of my head and into my laptop. Let the hard drive carry it all around. My brain needs the space. I also write a gratitude list in the morning, just five things but they have to be five different things each day. This morning, as I was sobbing into a tissue, it occurred to me that there are some people in this world for whom a packet of tissues is an unattainable luxury. So I wrote it down, “I am grateful for this tissue.” Before bed I quickly jot down all the significant things that I did today under the headings of either ‘Love’ or ‘Fear’.

I swim. I go for walks. I do yoga. I put on make-up. I get dressed up. I lie on the floor and listen to self-hypnosis cds. I talk to my plants. I cook delicious food. Most of all I try to speak to at least one friend every day of my life.

Do I do all these things perfectly every day? Not even remotely. And it can all feel a bit false at times but this is the only way that I know how to keep going. I have to convince myself every day that my darkest fears are not inevitable. Yes, the treatments have been ghastly. Yes, Nick has been unspeakably cruel. Yes, I am lonely and afraid sometimes. But what have I gained from having cancer? I have been shown a great deal of love. The truth is that none of knows how long we have to live on our beautiful planet. Sometimes I love this world so much that I never want to leave it. The only certainty is that, one day, I will. But I now have the courage to live as I want to live.

The World Cup is on. This evening Sheldon and I have been sitting on the couch and laughing, rooting for our team-du-jour (Ghana), whooping and dancing around the living room when we scored. That got me through the last three hours.

When I think about it, it isn’t the fear of death that makes me feel so utterly bleak. It is the fear of not living.

Anonymous, I don’t know who you are but I hope that you will find a way to stay with us. I for one, need your comments on Chemo Chic.

Love

Lily

* Here is a small selection of the many twelve-step programmes that are available. Please feel free to add your own favourites in the comments section below.

AA – Alcoholics Anonymous

Al-Anon – Families and friends of alcoholics

Coda – Co-dependents Anonymous

DA – Debtors Anonymous

FA – Families Anonymous, families and friends of drug addicts

GA – Gamblers Anonymous
Gam-Anon - Families and friends of gambling addicts

NA – Narcotics Anonymous

SLAA – Sex and Love Addicts Anonymous