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.”

Dance

Sometimes I just want to throw something, smash the glass right over the room;
Sometimes I want to roll tight up, eyes shut to the glare of blood;
Sometimes I want an ending, or beginning, just not this unending – stuckness.

But brokenness is what brokenness does and the respite still too fleeting;
Rolled up tight, means blind and bloodied by things so clearly coming;
Begin the end, end the begin, find the space to breathe again.

Own the feeling, feel the pain, there ain’t no gain till you dance in the rain:
When it come down, to the it why what, there’s only you her me. And I
Dance.

I could have been Einstein

“You could have been Einstein…”

When two old friends who don’t spend nearly enough time together any more sit around with cups of tea, the talk can take some odd turns. But when you are still alive thirty-four years after your first cancer treatments, and – most surprisingly – a year after treatment for your fourth, it’s a fair question – what would I have been like if I’d never had it? Again. And again. And again.

I might have been a god-damn genius for all anyone knows. Right?

I mean, PCCI has hit me hard this time, and I wonder why the devil I never noticed before. With other chemos, I mean, not today. But I was still seventeen when they started pouring mustine and vinblastine through my veins, prednisolone and procarbazine down my throat, and in 1980, no one had heard of chemobrain. So who would have known to check if I was more dappy than usual?

Though I doubt I was ever cut out for Einstein.

I was bright in school, highly capable but dreadfully lazy and totally lacking in academic discipline. College was the same, my potential always exceeding productive reality. Maybe I was a late developer in need of a mentor, but Einstein comparisons weren’t the ones that leapt to mind or lips, and anyway, instead of a future of glittering potential, what I got was a father berserk with drinking and fists, mums divorce, and Hodgkins Lymphoma – it was a busy six months. I always was a crammer.

Cancer treatments then were a comparatively blunt instrument, and the scars of various biopsies and diagnostic interventions tell their own story, to say nothing of the ticking cancer bomb left by high dose radiation in a young breast which lay dormant for nineteen years before exploding my world again. I was in a turbulent relationship with a complicated man I loved very very much by then, and the emotional fallout was rough. Treatments had come along plenty in the intervening years but don’t let that fool you, it’s no walk in the park. However, hiking up Helvellyn between bouts of FEC, everyone believed I was superwoman, so of course, I was.

But I wasn’t Einstein.

By the time number three made its presence known another twelve years on, life with that lovable complicated man had become a horrible mess, and in the preceding nine months a lot more bad things happened, including the deaths of my mum and adored stepdad, my cat, my job and this time a husband beserk with drinking and fists. Cramming again. The marriage was dead man walking for another six months or so until number four bloomed in my now breastless chest and I finally found the courage to say enough.

Einstein would no doubt have managed that a lot sooner.

Of course, I could never have been Einstein – physics makes about as much sense to me as – well let’s just say once I’d made a basic circuit of bulbs light up, that was me and physics done. Theories of relativity in my world have more to do with fathoming that my aunt is a great great aunt to my nephew’s children than a bunch of rules involving gravity, space and time.

Though perhaps Albert and I do have something in common after all. And when I’ve remembered what it is, you’ll be the first to know.

Always be tears

It’s ok to cry, when the world closes in;
when your heart is too small to hold all its feeling.

It’s ok to cry, when things that were, aren’t;
when people are true to the worst of themselves

It’s ok to cry – its healing, you know;
when you fall once again to the darkness below

It’s as the tears dry, when your sadness is done;
when you open once more to the arms of the sun

There’ll always be tears, one way or another.
Just never forget how to love.

Her me and I

Where will I go, who will I be?
Well I shall be me, of course!
But the me that is here, wherever here is,
Isn’t the me that I was.

The I that is me, in the here and the now,
Is one I’m not sure that I know.
But now that we’re here, her me and I,
We shall make a most fearsome us!

Coming to terms with the end of a love can be as brutal as the love itself, but with it comes the promise of freedom

Done

I thought I was done with this.
I thought I was done with feeling like this.
but it seems the feeling is not.

I shall have to rearrange the
bloody bookshelves.
Again.

I really was rearranging the bookshelves, thinking these words, trying to distract myself from the exquisite sadness of the final breaking of love and marriage.