Great to be Alive

Today is my birthday. Thank you everyone for all your good wishes and emails. I FEEL the love.

p.s. Happy Halloween!

It's Pink Day

Wear something pink today and donate £2 to Breast Cancer Campaign by using this link: http://uk.virginmoneygiving.com/ChemoChic
Or maybe don't wear something pink and give £5?

Chic in Pink

To: All my friends

Subject: Wear it Pink

Hello,

I'm supporting Breast Cancer Campaign's Wear it Pink Day.

This Friday, 29th of October, WEAR SOMETHING PINK and give £2.

Alternatively, you can choose to NOT WEAR SOMETHING PINK and give £5!

"Breast Cancer Campaign's mission is to beat breast cancer by funding innovative world-class research to understand how breast cancer develops, leading to improved diagnosis, treatment, prevention and cure. We aim to be the leading specialist in breast cancer research across the UK and Ireland, making a significant impact on breast cancer for the benefit of patients."

Please go to  http://www.virginmoneygiving.com/team/ChemoChic to make a donation.

Please also forward this on to your friends!

Love

Lily

Everything's Coming Up Roses

Standing in the kitchen, staring at the dishes in the sink, I am overwhelmed by a novel feeling.

I’m free! Free of cancer. Free to live. Free to write my book. Free to travel. Free to fall in love. Free to do whatever I want.

On the one hand, I have been cancer free since the day I had the surgery, fourteen months and twenty-three days ago. On the other hand, the doctors don't give one the 'all clear' until five years have passed. For the whole of this year I have lived constantly with a barely submerged dread that it might return. In reality, nothing has changed since the day before yesterday. But somehow in my mind this feels like a major turning point in my recovery.

Today’s outing to Harley Street is to see my psychiatrist. “Fill this in,” he hands me the standard depression multiple-choice questionnaire:

Do you have thoughts of killing yourself?

1. Yes
2. No
3. Goodbye!

Do you sleep more than usual?

1. Yes
2. No
3. zzzzzz

Are you confused?

1. Yes
2. No
3. What?*

...and so on.

“This is remarkable,” he remarks, “Last time you scored 31. Now it’s 17. You’ve gone from severely depressed to only mildly depressed in a month.”

I beam at him.

“Whatever you’re doing, keep doing it. I don’t think I will need to see you again. Stay on the anti-depressants for another eight months. I will write to your GP.”

*Not the real answers.

Shock and Awe

Anxiety has been building for the last couple of weeks. Don’t think about it. Don’t think about it. On Friday I completely deconstructed my book and began at the beginning again – with two months to the deadline. Don’t think about it. Don’t think about it. This morning I woke up with an imaginary tiger clawing at my chest. Don’t think about it. Don’t think about it. I’ve meditated. I’ve been for walks. I’ve watched countless old episodes of CSI. But the more I try to distract myself the more I think about it: today I’m having my follow-up mammogram and ultrasound scans.

As I’m meditating away: breathe, one, breathe, two, breathe, three... the phone rings. I forgot to switch it off. Don’t answer it. Breathe, four... ring. Breathe five... ring! It’s May. May is coming to the hospital with me. One of the life skills that I’ve learned in the past fourteen months and twenty-two days is how to ask for help. The old Lily would have just toughed it out and gone to the hospital alone. That is what I did on the day I was diagnosed. I remember my feelings of bafflement as the ultrasound doctor said “There is a tumour here and in my opinion it could be malignant. I’m sorry...” and my confusion as I stumbled from the room. I sat alone on a plastic chair in the corridor and tears sprouted from my eyes. I tried not to look at the people passing by. I desperately wanted a hand to hold.

If I think about it I may have had some kind of unacknowledged notion that enduring the hard moments alone was somehow courageous. I now regard such bravado as foolish.

So I asked Iris and Flossie and Tessa and Wanda and May. I wasn’t discouraged when any of them said they couldn’t make it. I didn’t assume that nobody loves me. My friends have lives and commitments. I knew somebody would say “yes.” That somebody was May. And what woman wouldn’t want a talented artist and trainee Shaman like May by her side when visiting the breast clinic?

I leave May in charge of the car for a few minutes. “I’m just going to zip into Pret-a-Manger and get us some coffees. Here’s the key, in case a parking warden comes.”

“Is it difficult to drive?”

“No, it’s an automatic.”

As I’m standing in the queue at Pret my phone rings, “How do you get the car out of park?”

My tests today are being done at the Harley Street Breast Clinic. Confusingly, this is different to the Harley Street Clinic where I normally go. Meg and I are shown into a miniscule waiting room. There are two other women sitting on a sofa about eighteen inches away. We and they conduct our conversations in low tones, trying to pretend that we can’t overhear everything that the other pair are saying. A nurse comes in. “Please complete this form.” It’s the usual you agree to exonerate the clinic of any responsibility for everything and pay through the nose should your insurance company fail to cough up contract. I notice that the insurance pre-authorisation number is missing from the form. I fish out my iPhone and call Bupa.

“Hello, I’m just about to have my follow-up mammogram and ultrasound but the hospital don’t seem to have a note of the pre-authorisation number. Could you check it for me?”

“Have you been seen by our medical assessment team?”

“Eh? No. What are you talking about?”

“Please hold the line.”

I spend an uneventful five minutes listening to the annoying Bupa music. Radiographer Jane comes in. “We’re ready for you Miss Lily.”

“Won’t be a minute,” I mouth and point to the phone. Another five minutes passes. I feel my shoulders rising ever so slightly.

“Miss Lily, when were you diagnosed with breast cancer?”

“Fourteen months ago”

“You only joined Bupa in May so this is a pre-exisiting condition. I can’t authorise treatment at this time.”

In a strained voice I tell Valerie, that is her name, that I joined Bupa in 1989. I explain that I temporarily transferred my policy to Bupa Australia and then transferred it back on my return to the UK, in May. I note, through gritted teeth, that although Bupa guaranteed me that my cover would be continuous I have had several hiccups of this nature in the last few months and that on each occasion I have been assured that the problem would be fixed.

“Well you should have called us earlier for authorisation.”

“I did. I called you fourteen months ago and was given authorisation. I’m just calling you now to check the number.”

“I cannot authorise treatment at this time.”

Suddenly I am in melt-down: “Listen Valerie, do you appreciate that I am at this moment in the hospital? Whilst you have kept me on hold for ten minutes the radiographer called me in for my mammogram. So you’re not only keeping me waiting but also the radiographer and all the other patients. Now you’re telling me that the treatment that was authorised last year is no longer authorised, seemingly because Bupa, despite repeated requests, have failed to correct a mistake on my computer record. And what I and the radiographer and my friend May and the other patients are all waiting for is to find out whether or not I have breast cancer.  Do you have any idea HOW STRESSFUL THIS SITUATION IS FOR ME?”

The two women sitting on the sofa eighteen inches away look totally absorbed in their magazines.

“I’m sorry I don’t like your tone of voice. I may have to terminate this call.”

I terminate the call.

***

I stand before the mammogram machine, uncovered in more ways that one. No clothes. No medical insurance. Jane inspects my breast “Wow,” she says, “Where’s the scar? Who was your surgeon? You must be very pleased with it.”

Squash. “Ow!” “Don’t breathe.” Zap.

I rejoin May in the waiting room clutching my very own CD of my very own mammograms. The CD has a big fancy ‘H’ on the front of it, along with my name and hospital number. I wave it in front of May’s face: “Lily’s greatest tits.”

Next up is the ultrasound. By comparison it’s positively relaxing.

***

“Come along Lily.” May and I grab our coats, bags and empty coffee cups and follow in Mr Hadjiminas’ wake to his consulting room. Pictures of my breasts are already plastered all over his light box. Without any messing about he gets straight to the point. “Everything is fine.”

I’m not really taking it in.

Next he examines my back. “That’s settled down well.” Since the last steroid injection a month ago the swelling has not returned. All of my crossing of fingers and knocking on wood seems to have done the trick.

“So, come back and see Suzy Cleator in three months. We will do another ultrasound in six months and your next mammogram will be a year from now.”

Before I know what’s happened I’ve shaken hands with Mr H, kissed nurse Tara and May and I are out the door. I stare about me at the elegant town houses on Harley Street. My body begins to tremble. I start to laugh. Then to cry. “How do you feel?” asks May. “I kind of want to lie down here on the pavement,” I reply. “Lily, I think you’re in shock.”

***

Since there’s still half an hour left on the parking meter we leg it down to Being Content. “Hello,” says Imelda. “Imelda!” I say, “I’ve just come from the clinic I had my mammogram and ultrasound scans they’re ALL CLEAR I need some nail varnish remover and an eye pencil.”*

***

May and I are recovering with tea and tomatoes on toast at Lowry & Baker, my local cosy café. I text everyone I’ve ever known: All clear!

“You should mark this day Lily,” says May, wearing her Shaman hat, “Go out onto your balcony tonight and light a fire in a saucepan. Write down all the things you are now leaving behind and burn them. Then get three sticks to represent what you want for the future and put those on the fire too.”

“I will do that May.” As I speak I upend my plate, spraying olive oil and sliced tomatoes all over my famous breasts. “How big do the sticks need to be?” I ask, indicating sizes with my fingers. I lower my hands and they crash hard onto the table, upsetting the teacups. It seems that in the overwhelming shock and relief of learning that I’m not going to die I have lost the comprehension of where my body is in space.

“Actually Lily, I think maybe you should forget about the fire. You might burn your flat down.”

*Reviews to follow.

Keep it Simple

A couple of days ago I was talking about stylish clothing designed for women who’ve had a mastectomy. There’s Chikara and, um... that’s it.

Like I said, some of us have a lumpectomy, some a quadrantectomy, some a mastectomy. Some of us have reconstructive surgery some do not. Some of us become fatter. Some of us waste away to x-rays.

During and after cancer treatments one’s body becomes a strange new land. I experienced baldness, sickness, weight gain, weight loss, weakness, fatigue, ulcers and dry skin. One of my breasts got bigger – and then it got smaller. I still feel uncomfortable in bras.

As a consequence I lost confidence in every aspect of myself. My mental and emotional underpinnings developed large cracks. My spiritual beliefs were shaken. My self-image was devastated. Before BC I was slim, sexy, fit and full of it. I had a wardrobe stuffed with figure hugging dresses by Vivienne Westwood, Diane von Furstenberg and Yves St Laurent in which I would shimmy about on the slightest provocation. I still do. Have them, that is - but I no longer wear them. Those gorgeous garments just hang off my skinny frame like damp dishrags.

In an effort to fatten up I have started eating Spiru-Tein a ‘high protein energy supplement’ made from rice protein, pea protein and soya. Let’s hope it helps. Other women I have spoken to bemoan the extra pounds they have piled on as a result of taking Tamoxifen.

Whichever way you cut it, breast cancer catapults one into a time of sartorial turmoil. What I want now in is a pared down wardrobe of simple, flattering - but not revealing - clothes that I can wear every day and dress up or down with belts and jewellery.

If you’re dreaming along the same lines, here’s a tip: Studio Nicholson are showing a preview of their Spring/Summer 2011 collection this Thursday - and taking orders at wholesale prices!

The Studio Nicholson look is understated. Androgynous chic. Designer Nick Wakeman has put together a range of garments that are easy to wear with confidence, no matter what one’s body happens to be doing today.

Studio Nicholson Spring/Summer Preview is at Guesthouse West, 163-165 Westbourne Grove, Notting Hill, W11 2RS on Thursday 21^st October from 5p.m. until 9p.m.

Time Takes a Cigarette

Two years ago today my cousin Gaby died of cancer. In the three months between her diagnosis and her death she endured a great deal of pain and fear. Gaby faced her illness with courage. That is not to say that she did not cry. Many times she became depressed, agitated and despairing. That is the nature of fear. That is the nature of cancer. But Gaby always maintained her essential self. She voiced her opinions. She expressed her concern and love for the people around her. She joked. She sat in the sunshine and bathed in the beauty of the world as only the dying can. Gaby fought with every fibre of her being to get well but the cancer overwhelmed her. She was a vivacious woman and a joy to be with. I miss her every day.

I was in Ireland with Sheldon and Doug when I got the call from Ben telling me that Gaby had died. We went to the nearest church, lit candles and prayed for Gabs. Sheldon gave me a big hug. Then we went for a walk on a rain-washed Kerry beach.

That was before I met Nick. Before I was diagnosed with breast cancer. Before I fell in love. Before I knew what it was to have my veins pumped full of poison. It was before I had to learn how to cling on to who I am when I didn’t even recognise myself in the mirror. Before I understood the anxiety of knowing that there was a malignant force lurking inside my own body. Before I knew how frightening it is to let go and trust another person absolutely. Before I ever experienced the devastating betrayal of that trust.

Can it really only be two years?

Two years ago I was afraid of cancer. I had seen what it can do and knew for sure that I didn’t want it. We don’t always get what we want. But how do we learn to want what we get? In my experience it is by understanding the only purpose of life: that it is to be lived in every moment, no matter what.

It is easy to take refuge in the belief that life is only a quality item when it is filled with fun, thrills, sex, holidays, clothes and electronic gadgets. A few of my friends have been unwilling to stay with me on my cancer journey. They simply disappeared. It has been too frightening, maybe threatening – too real for them. I’ve shed many tears over the loss of those people. If you have read this blog then you will know how I have been torn apart by learning that my Nick couldn’t cope. Cancer just wasn’t fun enough for him.

I would not have chosen cancer but it chose me. I also accept that it may well kill me in the end. But now I can honestly say that cancer has enriched my life. It has brought me closer to my family, to many of my friends and most of all to myself. Simply, I feel more connected.

If you are going through cancer then you too will be finding out who the hundred percenters are in your life. No doubt you will be bitterly disappointed by some. But try not to dwell too long on such regrets. Those with big hearts and souls will step up to the plate – and there will be plenty of them. This is real life. Forget about the people who won’t participate in it fully. Our darkest times show us the exhilarating truth of what it is it is to be human.

So take a tip from Lily: don’t wait for cancer or a stroke or heart attack to plug you in. Try doing everything you do today with integrity, with honesty, with compassion and most of all with love. It’s just not worth living any other way.

I love you Gaby.

Attention New Yorkers

                                                                   photograph by David Jay

A while ago I wrote about the SCAR Project by David Jay. This is a beautiful and challenging series of photographs of young women who have had surgery for breast cancer.

You can see the images on the SCAR Project website. But, if you live in New York, you now have a chance to see the photographic prints. The premiere exhibition of the SCAR Project is showing at OpenHouse Gallery, 201 Mulberry Street, from the 14^th – 17^th of October. If you’re lucky there might still be one or two tickets left to the gala opening on Thursday night, in support of Lance Armstrong’s LIVESTRONG Foundation.

Free Tatts

This time last year I gazed into my mirror. A strange, expressionless mask gazed back at me. Despite covering my baldness with wigs, turbans, hats and scarves there was no getting away from it – I was appearing weirder by the day. And then the penny dropped... my eyebrows and eyelashes were disappearing. Without these seemingly inconsequential wisps of facial hair ones visage takes on the blank look of some kind of other worldly space baby.

At the time I had no experience of what steps might be taken to reintegrate myself with the human race and little idea of who to ask. Eventually I figured out how to draw my eyebrows on with powder and to smudge eye shadow along my lids to create the illusion of lashes. Whilst I never did quite pass for Joan Crawford (above), my hand-drawn eyebrows at least made me look more JC than ET. But it was a rigmarole to perform that sleight-of-hand every morning before heading down to the corner shop for a newspaper. And if the postman happened to knock at the door I hid in the bathroom.

I had heard that one could have brows and eyeliner tattooed on but I feared that I might end up looking forevermore like an escaped circus she-man. I have since learned about medical tattooing a.k.a. Cosmetic Pigment Camouflage. This specialised technique involves using mineral pigments to apply semi-permanent tattoos to replace missing lashes or sparse eyebrows. Following mastectomy, a skilled practitioner can also create the illusion of a 3-D nipple and aureole. Clever shading can be used to disguise white scars by matching one’s surrounding skin pigment.

If only I had done a bit more thorough investigating I might have saved myself a few tears, curses and wobbly brow days.

But that is the whole point of Chemo Chic. I tell you about all the things I have learned and am still learning on my breast cancer journey so you don’t have to go through it all from scratch.

An email has just arrived informing me of a wonderful offer. Faye Parker, a Medical Aesthetician at Bijoux Medi Spa in Belgravia is offering FREE semi-permanent tattooing to anyone about to undergo or having recently completed chemo or radiotherapy (it's not advisable to do it whilst you're having chemo). According to Faye “This technique only takes 90 minutes and will last for a good 12 months before fading.”

I emailed back pronto: “What’s the catch?” and was pleased to get this reply: “No catch at all... It is something they like to do to help. Not everyone will want to go down this route but those who do are very welcome... If there is a massive uptake there might be a bit of a waiting list because Faye only has one pair of hands!”

Bijoux Medi Spa’s ‘phone number is: 020 7730 0765

Storm in a B Cup

Sometimes when writing this blog I fret that I am not covering all the issues from every angle. Breast cancer is a diverse disease. The type, grade and stage of your tumour will dictate the treatments and choices available to you. I have realised that I can only write Chemo Chic from my own perspective. What I love is raising discussions. If you have anything at all to say about any of the things that I write about I encourage you to use the comments sections to get stuck in.

You will recall that when I was diagnosed I was given a choice. I chose not to have a mastectomy. Instead I opted for a wide local excision or quadrantectomy with latissimus dorsi flap reconstruction. I had to weigh it up. A mastectomy would have meant losing my breast completely. Having no breast means there is no chance of the tumour returning in that breast. The quadrantectomy meant that I got to keep most of my breast and not have a silicone implant in my body. But now I will have to be monitored forevermore.

As it has turned out I’ve developed an ongoing seroma in my back as a result of the LD flap reconstruction. It is unusual and could not have been foreseen. As far as I understand, any surgery may give rise to complications. I feel content with my decision.

And that’s my point. With the advice of our consultants and the experience of others we reach a decision that we can personally live with. Some women have to have a mastectomy because of the size of their tumour. Some women choose a mastectomy, or even a double mastectomy because they just want to totally minimise the chance of the tumour recurring. Some women are advised against immediate reconstruction. Some choose never to have reconstructive surgery. We’re all different.

In recent months I have noticed that my right breast is now much smaller than the left (reconstructed) one. I broach the subject with Mr Hadjiminas. “Can’t you do anything to match this breast up with the other one?” Just in case you were wondering, I’m suggesting that maybe he could make the small breast bigger, not the other way around.

“What? No! It’s because you’ve lost so much weight. Eat more.” 


I already eat for England yet the kilos just fall away.

I can’t help feeling self-conscious about my odd breasts but under clothes it doesn’t really show. The same cannot be said for women who have had a mastectomy without reconstruction. For those women a substantially new wardrobe may be required.

From time to time I have looked at lingerie and clothing ranges designed specifically for those experiencing what is kindly termed ‘breast asymmetry’. With a few notable exceptions I think I can safely say that most of it falls into the category of “you wouldn’t wear it if you weren’t experiencing breast asymmetry”.

But today I discovered an American clothing line called Chikara. Don’t ask me what Chikara means. Designed specifically with ‘breast asymmetry’ in mind, the Chikara range uses clever ruffles, knots and layering to disguise the unevenness of one’s boobs. The clothes are stylish: simple and sculptural. I think any woman would love to wear them.

p.s. Here's some pretty good mastectomy swimwear...

Nicola Jane 50’s retro swimsuit

Nicola Jane bandeau bikini

Nicola Jane psychedelic one-piece

Woman Zone halter-neck bikini

Woman Zone cut-away one piece

Woman Zone panelled swimsuit

And one last thing...

Knitted breasts and other mad stuff on Etsy

What Goes Around Comes Around

In my last post I roundly slammed a plethora of Pinkwash products all aiming to part you from your cash by offering you the chance to support breast cancer charities. Now I am going to attempt to part you from your cash by offering you the chance to support breast cancer charities.

Yes, any of us can simply send a donation at any time with no more effort than a mouse click but, as the many breast cancer charities wisely understand, where’s the fun in that? That is why they are constantly devising innovative, crazy, silly, sociable ways to tempt you to get involved in fundraising.

Before I begin, let me say this: if you are currently undergoing surgery, chemotherapy or radiotherapy, forget it. Now is your time to receive help, not to give it. Once recovered though, you may be itching to give something back in recognition of all the kindness and support that helped to get you through.

Here is a quick rundown of breast cancer charity fundraising events that you might want to get involved in:

UK

Breast Cancer Care provides comprehensive information about breast cancer and its treatments. You can speak directly to a nurse by calling their helpline. Annual fashion shows in London, Cardiff and Glasgow are a great way to give with glamour. They also run a Carols by Candlelight service in December. Or get creative and organise your own Pink Friday.

Breast Cancer Campaign funds research into breast cancer causes and treatments. Organise your own event for Wear it Pink day.

The Haven provides caring, personally tailored support including complementary therapies and informative workshops at centres in London, Hereford and Leeds. There is an outreach programme for those who can’t get to one of the Havens. Amongst their fundraisers are challenging opportunities to do things like skydive from 14,000 feet (!), climb Kilimanjaro or ride a bike from London to Paris. More prosaic events include a Fish & Chips bingo night in Leeds and Fangtasia, a Vampire cocktail party.

Breakthrough Breast Cancer funds its own research centres as well as undertaking campaigning and education. They want you to Go Pink this October and organise your own fundraiser.

Walk the Walk raises money for a range of breast cancer charities primarily through their famous Moonwalks. Women (and men) take to the night-time streets clad in their brassieres.

The goal of Macmillan is no less than to “improve the lives of everyone living with cancer.” And they’re doing a great job of it. This huge charity provides a comprehensive database of information; a helpline; financial support; funds nurses and operates information centres in hospitals. Fundraising opportunities are too numerous to list, from the ‘World’s Biggest Coffee Morning’ to the ‘Enchanted Ball’ at the Savoy

Yes to Life aims to promote an integrated approach to cancer care by providing support and information. We’ve just missed out on their Venice to Dubrovnik bike ride but you are welcome to organise your own event.

Australia

The National Breast Cancer Foundation funds research into breast cancer and its treatments. Their key fundraiser is the Pink Ribbon Breakfast – organise a team and get stuck into some competitive eating for the cause. They also have a page of fundraising ideas.

The National Breast and Ovarian Cancer Centre “works in partnership with health professionals, cancer organisations, researchers, governments and those diagnosed to improve outcomes in breast and ovarian cancer” Their flagship event is the Pink Ribbon Lunch, held in Melbourne and Sydney.

Breast Cancer Network Australia works to provide information, support and advocacy as well as being involved in many policy decisions. Their website provides separate listings for ‘Key Fundraising Events’ as well as ‘Upcoming Events’ and an A-Z of fundraising ideas. One that caught my eye is ‘Pink Ladies – Women Make it Up’ an all women improv show in Sydney.

The McGrath Foundation promotes breast awareness amongst young women as well as raising money to place McGrath Breast Care Nurses in local communities. Their most notable fundraising event is Jane McGrath Day, on which national cricketers wear pink during a test match at the Sydney Cricket Ground. The McGrath Foundation encourages supporters to dream up their own fundraiser with the help of a Pink-tionary A-Z of ideas. Forthcoming events are listed on an events calendar.

Cancer Council Australia funds research into all forms of cancer as well as providing information for patients and professionals. They also publish the National Cancer Prevention Policy. Amongst their Pink Ribbon Day fundraising events is an opportunity to ‘Volunteer a Day for Pink’. Simply enter your state and postcode. They will let you know what’s available.

Breast Cancer Care WA provides support to people with breast cancer in Western Australia. The charity eschews the ubiquitous pink in favour of purple. Fun fundraisers include a Purple Twilight Walk; Purple Bra Day and the Boobalicious Ball.

Gosh. I didn’t realise how extensive this would be. And I haven’t even begun on the USA and Canada. If I’ve missed out your favourite breast cancer fundraiser, please leave a comment.