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Extract of 'Steel Petals- Voices'
My BRCA2/Breast Cancer Story. A cancer charity book of poems
‘Poems for you, by you’
‘A truly inspiring book of verse, Steel Petals compiles the heartfelt experiences of many sufferers of the BRCA gene mutation and associated cancers. Through their words, those who have been touched by cancer, be they survivors or family and friends, raise their voices to spread awareness and expose the raw truths surrounding the hardships of this deadly disease. These are stories of diagnosis and treatment, grief, fear, and hope. With all proceeds being donated to two worthy charities (Maggie’s House and The Eve Appeal), author and breast cancer survivor C.L. Monaghan invites you to support the courageous contributors from all across the world and the hundreds more who have been and will be impacted by cancer. Together, we can strengthen those who have wilted.’
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‘I sat for a very long while, staring at a blank page, wondering how to start this book. I mean, how does one begin a discussion about cancer and all its baggage? I wrote several prettified paragraphs, trying to ease my readers in gently to what is still a very taboo subject, and promptly deleted them all.
The whole aim of this project from the start was to give sufferers of BRCA and cancer a voice, and what is the point in having a voice if you don’t use it to tell the truth?
So, here it is: the whole truth and nothing but the truth, BRCA and cancer, in all its complex glory, laid bare. Within the pages of this book lies a raw, and sometimes brutal, account of exactly what a diagnosis means to the individual and all who love them.
However, please don’t stop reading here. Don’t be afraid of what lies ahead, because nestled at the very heart of every poem, every heart-breaking story, every journey is something special. At the root of it all lies the reason we all battle so hard to survive: love. This book is filled with it. Love emanates from every word, every page, every tear shed, and every heart bared by the people who’ve shared their experiences with you here.
When all is lost
And my world goes dark
When I can't find my way home
The road disappeared
Soaking wet from the rain
Every sign, every map is gone
If no one hears
My plea for help
If my voice reduces to a sigh
I can't see the sun
No moon, no stars
In the deepest dark shines no light
Then you send me an angel
To take my hand
To guide me through the darkest of night
You send me an angel
To be my eyes
To bring me home to the light.
By Mariet Van Knippenberg
(For Martin, my love.)
Part One: The Mutated Gene
A Journey of Hope
That first appointment, the family tree.
I couldn’t believe it was happening to me.
Then, that appointment when I sat and waited.
The expression on her face, before there were words, I already knew.
The worst of it all was dropping that bombshell.
And fear for family, surely they were luckier than me?
And onto our wedding, the very next month.
Even after the news, he still wanted me.
Appointments with nurses and surgeons aplenty.
Mastectomy not a choice but a necessity.
All went well, and what a relief -the implants discreet.
Eight weeks later, two positive lines!
Becoming a mum was always my dream.
Five years later and now a mummy of three,
It’s their risk and health that’s the worry.
Family complete and onto a list.
Covid is making ovaries out a wait.
Always a previvor and never a victim.
Brca1 you’re not getting me!
By Louise Allan
“I’m sorry to tell you, the test came back positive.”
In truth, it wasn’t that much of a shock when the doctor told me; I was expecting it. With two BRCA2-positive first-cousins fighting breast cancer, it didn’t take me very long to decide to get tested for the gene mutation too.
What I wasn’t expecting, was to hear those words twice in the same week.
I’m forty-six years old, I’m BRCA2 positive… and I was given the devastating news that I had breast cancer just seven days after my original BRCA2 diagnosis.
My resolve crumbled. I sat in a room with the doctor. My husband was crying and holding my hand, and all I could think about was my kids. What would I tell my kids?
I immediately wanted to document my journey. I know; it sounds bizarre. It’s not the first thing that would cross most people’s minds. But I’m a writer. It’s what I do.
Let me tell you a little more in the hope that you’ll understand why making this book is important to me, what I hope to gain from it, and what I aim to give back.
I have suffered five heart-breaking miscarriages and fifteen (and counting) surgeries. I also have asthma, food allergies, high blood pressure, and not very much patience. So, you can imagine I was a little annoyed at adding the BRCA2 and breast cancer diagnoses to the list. I mean, come on, Universe. Cut me a break.
Cancer was the easy one. Everyone has heard of that. But how many people have heard of BRCA1 or BRCA2 and know what it means? I certainly didn’t.
Everyone has the BRCA1/2 gene, but some of us ‘lucky’ ones have a mutation of one or both of those genes. It basically means that a positive test result puts a person at a much higher risk of developing breast cancer and/or one of the cancers associated with those mutations, namely ovarian, pancreatic, prostate, and skin. The mutation runs in families, so if one of your parents has it, you have a 50:50 chance of inheriting it. On that note, if you have a close relative—mother, sister, aunt, or cousin—who has developed breast cancer, it might be advisable to ask your doctor to refer you for genetic testing. I did, and it saved my life
The BRCA test itself is very simple. I spent around half an hour in consultation with my genetic councillor, and then she took a blood sample and told me the results would take about four to six weeks to come back. Christmas was approaching, so we agreed to communicate again after the holidays. She handed me a big bunch of leaflets and a huge booklet about BRCA2 and preventative breast surgery. I came away a little overwhelmed by it all but reassuringly positive. I was grateful to have my cousin to chat with about her experiences, and after a brief search, I found a couple of BRCA support groups on social media where I could discuss my diagnosis and my concerns with other women.
Notice I said women? It’s important to note here that BRCA mutation isn’t restricted to women. Men have it too—like my dad—men who are also at risk of developing breast cancer and prostate cancer. And yet, I was horrified to find that men weren’t allowed in the support groups. Now, I can understand why not. They contained many post-surgery photos of boobs and tummies that ladies had bravely shared with the group, and it takes guts to do that in front of members of your own sex let alone the opposite sex. Personally, I’ve never seen such bravery. But I kept thinking about those poor men. Who were they sharing their worries and post-surgery pictures with?
My thoughts branched out. I spent hours trawling the Internet looking for relevant information and forums where people like me could share their stories. I found more than a few. Some were old and no longer active, and some were useful. What I found was that I craved more and more personal stories. I wanted to hear how everyday people, like me, were coping with BRCA and breast cancer, and I found that sufferers were desperate to connect with people who could empathise. These private groups were safe places where we could cry, moan, and laugh together without judgement or misguided sympathy. I would read posts daily from women all over the world, and I realised just how much we had to offer each other.
There is a great quote by the ancient poet Rumi that perfectly illustrates my own experience with the Big C:
‘Even when you tear its petals off one after another, the rose keeps laughing and doesn't bend in pain. "Why should I be afflicted because of a thorn? It is the thorn which taught me how to laugh." Whatever you lost through fate, be certain that it saved you from pain.’
I refuse to bend to cancer. It does not and will not define me. But I have also allowed it to change me—for the better, I might add.
Through my writing, I have been able to express and process my own experiences. I have used writing as a cathartic tool and found it to be a great success. Poetry allows me to purge the roiling pot of feelings in a way that heals and soothes. Poetry bleeds the heart and feeds soul. It touches people’s subconscious, allowing them to understand the subtleties of another’s pain, love, joy, and fear. It is a secret weapon that needs to be shared.
Thus, ‘Steel Petals’ was born.
Within the pages of this book, you will discover: the secret power of many BRCA and cancer sufferers, previvors, survivors, and supportive family and friends; the power of courage, of grief, and of hope; the invaluable sense of togetherness and shared experiences; and the support of those who know exactly what this diagnosis means. Men and women around the globe raise their voices in solidarity to help fund vital research for future treatments and ongoing support.
By buying this book, you have directly contributed to our cause and on behalf of us all, I thank you.’
- extract from Steel Petals ‘Voices’ written and compiled by C.L. Monaghan and friends.
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