Talking photographs and Flat Friends on BBC Wiltshire

ffcala4frontdraft03 At the end of last year I visited BBC Wiltshire in Swindon to do a live radio interview with Graham Seaman, talking about our fabulous charity Flat Friends UK and my year long photographic project to produce our first Calendar – quite exciting for me! Catch it on iPlayer here (listen from 1hr 28mins in). The Wiltshire Times also covered the story

Organising the printing of this remarkable project was an experience in itself, and my thanks to Mike at Serenarts in Bradford On Avon for coming to the rescue at such short notice, and working so hard to get things right.

See the images from the calendar and some of the extras in the Flat Friends Gallery

Full press release below:

WILTSHIRE WOMEN SPEARHEAD UNIQUE CALENDAR FOR CHARITY FLAT FRIENDS

Two Wiltshire women have become “Calendar Girls” to create a unique calendar that features uplifting photographs of remarkable women celebrating friendship and life after mastectomy without reconstruction. Sarah Dow from Keevil and Salisbury resident Susie Colson joined other members of Flat Friends from all over the UK in producing the calendar to raise awareness and funds for the charity. Sarah was lead photographer on the year-long project while Susie was in front of the camera, featured in August and on the cover.

The calendar’s launch coincides with additional celebrations for Sarah, who has also just gained professional recognition and top marks to become a Licentiate of the Royal Photographic Society.

Both Sarah and Susie are members of Flat Friends, the UK’s only charity solely dedicated to the support of women facing or living with mastectomy surgery without breast reconstruction, due to either a breast cancer diagnosis or preventative surgery. When the group started throwing fundraising ideas around, it was never going to stop at t-shirts and phone cases: in no time at all “Calendar Girls” was in the mix and that was that – the seed was sown. Sarah picks up the story:

“If you’ve ever met a Flat Friend you’ll understand that this was never going to involve strategically-placed cupcakes, we were after something much more authentic. Most importantly we wanted to celebrate our friendship, and to show that it’s normal and fulfilling to live without reconstruction after mastectomy surgery. So much ‘survivor’ photography focuses on scars and the kind of portraiture that doesn’t really reflect our everyday life or how we see ourselves. We wanted to show that life goes on, we still look fabulous, and focus on what we have gained, not what’s been lost.”

All the photographers and models involved with the calendar are members of Flat Friends living with either unilateral or bilateral mastectomy without reconstruction. Some use prosthesis when they feel like it, some never do and go flat all the time. Gilly Cant, who founded Flat Friends two years ago, continued: “We wanted to show that survivorship is something that happens every day, and even though our experiences have changed us, friendship, love and understanding matter far more than body shape, and every one of us is still all woman”. Both Sarah and Susie are prime examples of this ethos.

“I was really clear from the outset I didn’t want reconstruction – I simply didn’t want to put my body through any surgery that wasn’t necessary, and after trying prostheses once, I just knew it wasn’t me. But back then there was no-one to turn to for advice or support, so I had to figure things out for myself. Being part of Flat Friends is like being part of a huge extended family of people like me, and it’s been my absolute privilege to travel, meet and photograph so many of my flat friends throughout the year – something truly magic happens every time we come together, it’s like we’ve known each other all our lives.”

The calendar was a major project for Sarah in her burgeoning career as a creative photographer, which launched with an exhibition at Salisbury Library in September. She is now working closely with one of the UK’s foremost portrait photographers, Bella West FBIPP ARPS, and developing a challenging self-portrait project that explores identity, loss and healing after physical and emotional trauma.

susiecolsonSusie Colson (right), 56, was diagnosed with two tumours and DCIS last year: mastectomy was her only option.

“I pleaded for both breasts to be removed,” she says: “I knew instantly that reconstruction was not an option for me, but I was told I was having a knee jerk reaction – in effect, I couldn’t possibly know my own mind, I was only 55, so what did I know.”

Her first mastectomy and the discovery of Flat Friends coincided in August 2015. She found that the refusal of doctors to consider a bilateral mastectomy when only one breast was affected was a common experience – and that Flat Friends was a firm advocate for individual choice.

“At last I knew I wasn’t weird for wanting to go flat and had my second mastectomy in January 2016, which turned out to be a good choice as I had extensive neoplasia in my “healthy” breast. I love being a member of FFUK: everyone is so positive and if anyone is having a hard time, then we all jump in their pocket and take the ride with them as best we can. And I loved being part of the calendar: there was lots of fun and laughter on the shoot. I look forward to the next FFUK meet up because these girls are all bonkers!”

More from the Calendar girls on the Flat Friends website…

I am an awesome breastfree woman!

Breast Cancer awareness month starts tomorrow and I am probably one of a small army of survivors who usually unplugs the wifi until its over because of all the crass and self indulgent marketing campaigns that plaster social media in the name of #awareness.

This year, however, I’m joining Flat Friends UK in trying to promote an altogether more positive image of life after #cancer and, from time to time this month I will post a photograph that shows how much it means to me to be alive, #breastfree and still #allwoman. Here’s their blog post all about it…

If you want to support us, help by first making sure you and those you love know your body and check it regularly for changes. Then share this picture (and others on our public FB page) across whatever social media channel you prefer. And if you are facing surgery, go to www.flatfriends.org.uk where you will find your way to our closed group with many loving voices of experience and arms of support.

Thank you xxx

Also follow @FlatFriends_UK on Twitter …

 

The she inside

The she insideThe I I see
the you that’s me
The we we are
the ones we’ll be

The she inside
the shadow deep
Where truth reside
and dare not speak

Who is the we
that be on show
The I you see
you think you know

And of the lost
the ghosts of we
Who counts the Is
that’s really me?

There is no single self, only single moments in time and perception that connect and influence the next in continuous evolution

Love and understanding

Jan Vaisey and Ian Harvey play at the Keevil Folk Festival 2015

Jan Vaisey and Ian Harvey play at the Keevil Folk Festival 2015

I listened quietly to the gentle music drifting from the two musicians on our little stage thinking, this is my Sunday morning playlist. The kind of soft, lilting melodies that wrap you in warm sunshine, sweet smelling hayfields and make you feel there is nothing urgent to be done, ever.

I wandered over to the table selling CDs of the bands playing at our little festival of folk (in my village it’s less Glastonbury, more Pleasestayawakeonbury) but there wasn’t anything by Jan Vaisey and Ian Harvey there, so – and this is SO not me – I rushed over to them as I thought they were leaving, and asked rather stupidly were they on Spotify? Gah! Well, no, they weren’t and they’d never even made a CD, they just gigged where they could and enjoyed making music.

Anyway, cut a long story short, they weren’t leaving and Jan and I talked a lot more during the evening, because it transpires she not only has a beautiful voice but she’s also just six months out from aggressive treatment for breast cancer, and today was the first time she’d trusted herself to sing again in public without the words pinned to her nose in case she forgot them.

Chemobrain is a bitch.

Which brings me to something else that’s a bitch – organisations trying to help and support women facing traumatic decisions about surgery for breast cancer, when they fail to think things through and answer genuine questions in a balanced and meaningful way.

Yes Breast Cancer Care, sorry, but I’m talking about you.

Vita issue 24 page 17

Vita issue 24 page 17

I’m going to pull you up on an answer you gave in issue 24 of Vita magazine (I’d link to it but at the time of writing it’s not online) because it’s important to every woman facing or living with mastectomy that bias is addressed. I know you probably didn’t mean it to come across the way that it does, but I’m afraid that’s no excuse.

I think you fail to recognise the distress that facing annual screening of a remaining breast causes, and the very real fear of recurrence that most of us live with once we’ve had cancer once. Or twice.

Ok four times in my case but I’m still here so keep reading…

My biggest concern is when you write:

“Some people think having both breasts removed will give them piece of mind but there’s a risk of complications… as well as the potential emotional, physical and sexual impact”

and

“Surgeons are usually reluctant to remove a healthy breast for these reasons”…

It feels like you’ve addressed the writer’s fears and answered her question by implying that there is no peace of mind in prophylaxis and surgeons won’t do it because it’s emotionally damaging. Neither of which is true, and both of which are likely only going to add to the poor girl’s stress and confusion, never mind those reading that are also facing surgery, or what it says about those of us that chose to have both breasts removed.

I say chose. Clearly none of us chose to have cancer. We’re operating within a limited range of ‘how do I want to stay alive?’ options here.

These are very personal decisions, and every patient has the right to explore every option, upsides and downsides, with her oncology team and anyone else she turns to for support. Every woman’s situation is different, the choices we make we live with the rest of our lives; we shouldn’t have to justify them or have them feel dismissed.

The truth is, every surgery carries risk of complication, and every treatment for breast cancer has the potential to impact upon a woman’s emotional physical and sexual health in ways none of us are prepared for. But with love, support and understanding we recover. A woman who opts for prophylaxis is just as emotionally, physically and sexually resilient as one who doesn’t. It’s fear of the unknown and uninformed choices that cause the most damage.

Who we are runs so, so much deeper than our body parts.

You know, I read recently in a support group that someone was “lucky” with the treatment they’d received, supported by HCPs, given options, second opinions, supported in the choices they made, able to talk through fears and thoughts at any time with their team.

Lucky ?!?

That shouldn’t be luck, that should be standard for every woman.

breast cancer care, we need you to be part of the solution, not the problem. And if you want to gain a deeper understanding of the real world issues involved, reach out. For starters, there’s a powerful group of women at Flat Friends that have trodden (or are treading) this path who’d be happy to help.

And thank you for listening.

Talking of listening, if you need to relax after all that, and with apologies for the quality of the recording I found on YouTube, here’s Jan and Ian “You’ll never leave Harlen alive” 2009

I’m proud to be their new Number One Fan 🙂

One Voice: Meet Sarah Cretch

I’m such a chemo-brained twat – been trying to fathom how to reblog this article on HuffPo for the last half hour, but since I can’t find a nice handy little “reblog” button, I’ve had to resort to old-fashioned copy-and-paste.

I haven’t written much about it myself but that doesn’t mean I don’t believe in the need for change in the clinical pathway when it comes to surgery for breast cancer. The treatment paradigm is flawed, and far too many women are still pressured into treatment choices that are not right for them. Conversations with healthcare professionals and information from the major charities lack balance and equal discussion of all the options available.

But I’ll let Sarah Cretch do the talking, she is far more eloquent and this article, just published on HuffPostUK this morning, shows you why.

One more thing: Gill Roberts, who founded the UK Facebook support group Flat Friends (now also with website), is a remarkable woman who I became firm friends with when we met just before her second, prophylactic, mastectomy. She is a true change-maker and I am behind her every step of the way. See her this Thursday 2nd July on This Morning from 10.30am BST. More about THAT when she takes my muzzle off!

So, with appropriate fanfare, meet Sarah….

Breast Reconstruction, and Why ‘Living Flat’ Is an Acceptable Option
Posted: 29/06/2015 09:48 BST

Unlike Carol Jackson I had made a decision not to have reconstructive surgery two years prior to being diagnosed with invasive breast cancer. In the Eastenders storyline Carol is struggling with coming to terms with her body after surgery for breast cancer. She is so overwhelmed by the loss of her breasts she cannot bring herself to consider the reconstruction being offered to her. It is a complex and difficult decision to make. At the time I made my decision not to reconstruct I had no idea I would get breast cancer. No idea I would have to have a mastectomy. No idea I would be the one in three who would get cancer.

Like many women I was supporting a friend through her diagnosis and treatment choices. She asked me if I thought she should have reconstruction. My whole body convulsed as I said “No.” I was shocked by the intensity of my response. Looking back the tumours were probably already there and perhaps my body was telling me I would soon have to make this decision myself. My friend chose to have reconstruction. There were complications. She had multiple surgeries. The cancer spread. She died in January 2014.

Flash forward to May 2014. I have breast cancer. I am sitting in the surgeon’s office. I have accepted I need a mastectomy. I remember the conversations with my friend. I know I don’t want reconstruction. I tell the surgeon I don’t want reconstruction but however loud I say it he doesn’t hear me. He offers me two types of immediate reconstruction. I say I don’t want reconstruction. He says I can have it later. I say I don’t want it later. I don’t want it at all. This goes on. A conversational groundhog day with three different surgeons, one of whom was a woman.

The Breast Cancer Nurse asks my boyfriend if he is okay with my decision not to reconstruct because it could affect our relationship. He says “I don’t care as long as she’s alive.” Finally the doctors and nurses accept I don’t want reconstruction and that both my boyfriend and I will be able to adjust to my new body. I have a single mastectomy. The nurses on the ward presume I am having a delayed reconstruction. I tell them I’m not.

I get my results. I get the all clear. The surgeon tells me his only regret is that I didn’t have immediate reconstruction but I can have it later. I don’t bother responding. I am elated to have the all clear and bored of saying the same thing over and over again. I don’t want to ruin this moment.

A year on and I know I made the right choice for me. My boyfriend still loves me, I have been able to return to full time work, go on holiday and live a “normal” life. Despite the emotional trauma of the cancer diagnosis I made my decision and asserted myself to get the treatment I wanted. I relied on the support of my friends and family. I also relied on a whole new community of friends on line. Via social media I met women from all over the world who were living without reconstruction and were challenging the dominant belief that reconstruction is an essential part of breast cancer treatment.

Through this online community I got to hear stories of people living breast free. Many of them had double mastectomies and were living completely “flat” rejecting all prostheses. These new friends shared photos of their scars, so I knew what to expect after surgery. They shared stories of having to stand up for themselves to get the treatment they wanted, so I knew I wasn’t on my own. They taught me not to be ashamed of my new body, to accept my difference not disguise it.

One of these new friends, a lady called Gill Roberts, has set up a UK online support group called Flat Friends, for women who are living without breasts. Some of us had double mastectomies and go flat and some are “uni boobers” like me. We all have different stories, some of us chose not to reconstruct, some have deconstructed after failed surgery, some have had preventative mastectomies and some like Carol Jackson, are currently flat but considering reconstruction at a later date.

This group has been invaluable in helping me come to terms with my post-surgery body. Being part of this community I know I am not “militant” as one of the hospital nurses described me, but just a woman who was absolute in her resolve to avoid any additional surgery. For me, getting back to normal life after cancer is not about getting a new breast but getting as healthy as possible, as quickly as possible. The truth is I have lost my breast to cancer and no surgery will replace it.

I am not anti-reconstruction but I am firmly pro-choice. The treatment I got from the NHS was unequivocally brilliant apart from the assumptions everyone was making about my need to have reconstruction. I believe that the medical team thought they had my best interests at heart. They had the facility to replace my breast and they wanted to help me. I don’t blame the medics. I think they were just reflecting the dominant messages of our society that surgery is simple and breasts are everything. Many, many women are extremely grateful for the range of reconstruction choices available on the NHS. I just wish they had presented not having reconstruction as a choice equal to reconstruction. I just wish they had listened to me sooner.

I want to take this opportunity to thank all my “Flat Friends” for giving me the support I needed to make my decision when the mainstream services didn’t hear me. I want to tell every woman facing choices about reconstruction post mastectomy that you have to make the choice that is right for you. These choices include both reconstructing and not reconstructing. Living flat is an acceptable option and if this is something that resonates with you there is a whole community online just waiting to support you.

Sarah is a founder member of Flat Friends the online advice and support group for women living without reconstruction after mastectomy. For further information about Flat Friends please go to flatfriends.org.uk

Life

I nearly died again, you know –
Bloody glad I didn’t!
Too much still I want to do
For life to be an isn’t.

Remarkably I’m in one piece,
Though bits of me are two,
And other parts now wired for sound –
Bionic through and through!

So here I am all set to stay,
Stubborn to the last.
Too much still I want to do
For life to be a passed.

image

Four blackouts, four falls, one broken clavicle and a cartload of diagnostics later we discover an electrical fault called heart block that has been literally stopping my heart. Pacemaker surgery was complicated by veins gone all twisty from radiation scarring, but is now in place and working well – so I should stay upright for a while yet 😉

Barbie

Barbie the Warrior

Barbie Ritzco. Her name has a resonance all its own, don’t you think? It dances around your head and tantalises your tongue with its rhythm. It whispers of warrior and thrums with the beat of the runner. Barbie Ritzco.

Barbie died yesterday.

It was almost three years ago when, in my search for people like me, I came across the Scar Project, and though her name didn’t stick in my chemo brain consciously at the time, it wiggled into a crack somewhere. Her picture, on the other hand, made my heart skip. She was a real soldier. She was beautiful. And I wanted to be like her, very much.

And then one day something came up in my Twitter feed and I recognised the picture… Hey, was this THAT girl? This picture I loved even more, and the mantra she tweeted has stuck with me ever since. Find Your Strong.

Think about that for a moment.

Find YOUR Strong.
Not “BE” strong.
Find. YOUR. Strong.

And so I came to Barbie proper, and to Flat and Fabulous, Sara Bartosiewicz-Hamilton and to people like me. First a handful, then a few hundred, now over a thousand, we find each other from the corners of the world and we swell – real, beautiful women who live life just as we are, who find our strong, and on the days when we don’t, we have each other.

I wasn’t the only one. And sometimes, that’s a very good thing to know.

What Sara and Barbie started needed starting. The discussion that every woman facing breast cancer surgery has, WILL become more rounded and inclusive, every option explored, every woman heard.

Barbie died, and that fills me with sadness. I honour her life, howl at her bloody gone-ness, and hold her close to my heart where she has become part of my strong.

Beautiful warrior, dance on…

Flat & Fabulous – the closed group, where we share, laugh and cry in private
Flat & Fabulous – the public fan page
Flat & Fabulous – the new website, just launched!
Barbie runs…

The Edge

How many times must we cry?
Cry as the hopes and desires of the future seem
Once more crushed by the weight of the world as it is

How many times must we scream?
Scream as those waves of anguish seethe
Once more from the eye of the storm of a life so desperate to breathe

How many times must we die?
Die those sad little deaths of dulled disappointment
Once more pressed to the end where reason remains, clinging

On a knife edge
While all are turned to the east as dawn breaks for the one
The other teeters – unseen, unheard, undone

Little Tree

Grow strong little tree, grow true,
Grow tall little tree, for me.
Be brave little tree, be wild!
Be free little tree, for me.
Dig deep little tree, down down,
Stand firm little tree, for me.
Protect little tree, my heart,
You see little tree – you’re me.

Oh the silly things we write while people try to die.

The day I get the call, the day my husband is in intensive care after overdosing, yes that day. That day I cut down a six-foot diseased shrub and I lop one half of a young ash so that the other can grow straight. I saw. I prune. I eliminate the rotten, the broken, the weak, and I do it in grim silence. For once, the voices in my head are quiet.

These, apparently, are the things we do when those we love try to destroy themselves and in doing so suck all around into the enveloping darkness. When you ask over and over in rising anguish “why can’t you see it? why can’t you see the light? It’s here, right here, why can’t you SEE IT?!”

I know more than I ever thought I would about clinical depression, yet still I struggle to understand.

This day also, Maya Angelou is laid to rest, and thinking about the courage and resilience of the woman behind Still I Rise is exactly what I need. So I lift my eyes and heart in thankfulness and leave you with the opening lines of I Know Why The Caged Bird Sings

” ‘What you looking at me for?
I didn’t come to stay…’

I hadn’t so much forgot as I couldn’t bring myself to remember. Other things were more important.”