I got home from work with a day surrounded by snot, tantrums and giggles from the four year olds that I teach. On my phone I had two missed calls from the Genetic Department and I had just sat down to eat my favourite supper of cheesy pasta (my absolute guilty pleasure, that and strictly come dancing!) My phone started to ring again with the same number; I answered with the assumption that it would be to change my appointment as my booked appointment wasn’t until the following Monday.
Instead, I heard the soothing voice of my genetic counsellor saying “Fenella, it’s good news!”. I was in a state of shock and elation filled my body. This feeling was accompanied by “really, are you serious?”, “really?”, “Oh my goodness, no”, “are you sure?” type statements, as well as a delayed onset of tears. I felt an immense relief but also disbelief; I felt like an imposter. I had convinced myself that I would have the gene alteration and had planned my life timeline around this. You know, breasts out at 25, children at 27 through IVF embryo selection, ovaries out at 30, regular checks up… the normal bucket list for a 23 year old.
I first rang my boyfriend; a beautiful moment. He has been so understanding, open and accepting of all the conversations surrounding the testing. More men need to be involved in conversations around women’s health to reduce the stigmatisation and the gender health gap that reverts back to misogyny and the ‘ideas’ of women’s bodies- more about that later. A few poignant lines of “you have got your life back” and “I am so proud of you” spring to mind; he isn’t normally a man of many words!
I next phoned my mum. I was a bit nervous about doing so as I didn’t know how she would react. Throughout all of my testing and talking around the BRCA1, I have always felt a huge connection and sense of service to my mum, and other women with breast cancer, due to her going through so much with her cancer diagnosis. That phone call I think was the best phone call I’ve had in my life. We both burst into tears, a mutual understanding of what it meant (I am crying now!). I mean, my mums tears were more wails! She said, “This is the best news I’ve had in my life.” The ability to be able to give her that news is something I will never take for granted.
Phone calls from my brothers – pillars in my life – followed. I called friends, blubbering down the phone. The main thing I want highlight is the love I felt from the people around me – I feel insanely grateful. Even writing this, I feel a warmth inside me and a lump in my throat. I went to bed that evening knowing I no longer had to worry.
The following day I received this messaged from the father, who I believe has summed it up perfectly: There is an expression ‘best laid plans laid to rest’ … have never really understood it… but perhaps I do now; those plans can be shelved and you can LIVE, without the burden and worry that you have carried for so long. I no longer need to plan my life around a risk factor. I feel free.
Although I feel free, I also feel a sense of duty. A duty to advocate for the importance of genetic testing, talking openly about women’s health, questioning the ‘normal’ symptoms and to continue educating myself. Through the ‘sisterhood of inherited risk’ that I have found through sharing my story, I met Elysia, whose stories and thoughts I share below through poem. I hope that me sharing mine and sharing theirs, provides comfort, sparks a new thought or inspires you to seek your own answers about your health and also be an advocate for women’s health.
You can find out more about the BRCA gene alterations on this page of our website.
If you would like any information or advice around BRCA gene alterations, genetic testing or your cancer risk, you can get in touch on nurse@eveappeal.org.uk or 0808 802 0019.
Beating around the Bush
The two lumps on our chests cause such grief,
These networks of milk ducts are so linked to our sexuality and self-belief
Are they too small, too big or the same size?
And why are they seen as a bloody man’s prize?
If we keep viewing them as potent symbols of femininity and youth,
We tell women that breasts define your womanhood and that’s just not the truth,
It will continue to prevent early diagnosis and body awareness,
More work is needed to close the gender health gap and stop this unfairness
Ovaries being depicted as flowers doesn’t help our case,
It’s telling people our femininity has a sell-by date,
That are the ovaries are either in excess or deficiency,
They are the cause of all disorders in women, historically.
If we keep calling ovarian cancer the ‘silent’ killer, the ‘whispering disease’,
We are silencing women’s questions, their voices, they are lost in the breeze,
I know ovarian cancer
doesn’t end in happily ever after,
but the stats are grim and so is the waiting list,
and still symptoms are being dismissed.
Gone are the days of hysteria and the wandering womb
The cure being marriage or pregnancy, laughable really,
Yet, I’m not sure they are really gone, these defining tokens of a women’s life prevails still now in women’s health,
Are we really free from seeing women through a man’s identity
When our reproductive organs are seen as symbols of sexuality,
So much so that prevents women going to the doctors in case of perceived promiscuity.
We need to keep questioning the ‘normal’ again and again,
The tummy aches, the change in bowel movements, the intolerable pain,
The new lump, however tiny and the family history,
So women’s health is no longer a bloody mystery.
21 women die each day from a gynaecological cancer,
With only 2.5% of funded research yet 1 in 3 having a problem, how can we expect the answer?
The numbers just don’t add up,
So, let’s stop ‘beating around the bush’ and take ownership of our bodies.
By Fenella Symes
Inspired by Elsia Oneil, co-founder of The Galatarian.