Carla

's note

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Remembering Simona Ahcin: 1976–2023

I think I got punched in the face, you know?


At 37 years of age, it was news that rocked my world. I was told that I had stage 4 metastatic breast cancer and that the prognosis wasn't good – the cancer was already established in my liver and my bone. I didn't see it coming, so I just kind of did what I had to. I started treatment and made peace with my life as I knew it.


I prepared to die.


But then, my hair started growing back. Then it was onto maintenance therapy. And then about two years later, I realised I felt good – that I wasn’t going anywhere. I had so much energy, and I still had so much to give. And the bills certainly wouldn’t pay themselves either.


So little by little, I just became involved in all sorts of crazy and wacky things. I ended up as one of the faces of a campaign for ‘Breast Cancer Now’, aiming to stop women dying from cancer. Then one thing led to another, and now I'm sitting on the European Breast Cancer Coalition for Europa Donna and have just attended their patient advocacy training surrounded by other powerful and inspirational women. But that’s not all, I’m also part of Força – Strength Against Cancer, a UK registered charity that was formed by my friends after my diagnosis.


It was Henry David Thoreau that wrote something that’s always stuck with me: “To have made even one person’s life a little better, that is to succeed.” I don't care when I go, but when I do, I want to leave a little dent – leave this world just a little bit better because I've been in it. That’s why every day I take the opportunity to try to do something kind, something nice or something that makes a difference. It’s become my purpose in life.


Metastatic breast cancer is still very unknown. It’s a completely different disease, even to breast cancer. It needs more awareness and more education behind it. It’s a fight those living with it can’t win, but it’s a fight we’re very much still in you know. So, if I can play a part and help change the way cancer care is delivered, inspire people to say ‘Because of you. I checked myself’, and shape how metastatic breast cancer is known out there in the public, then it’s an amazing opportunity.


My diagnosis felt like a life sentence – a death sentence even. But over the years, I've become stronger than I was. I know what I want to do, and I know what I don't want to do.


I've lived more in these last 11 years than I lived in the 37 years before."

Carla Whitbread

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Portuguese flag

I was born and raised in Portugal until I was 12, which is when my parents immigrated to the United States. I then spent 15 years in New Jersey, all until I met my Prince Charming and moved with him to the UK. I consider myself Portuguese, but the UK is where I’ve made my home.

Serial number 2000, 2, 2012, 49

I spent a lot of my early adult years in New Jersey, but when it came to the millennium, I went to celebrate in Dublin with one of my good friends from university. It was there where I met my future husband, my Prince Charming, so I went home, packed my bags, and moved to England in 2000. He’s one of the priorities in my life, along with my two wonderful children. It was in 2012 when I got my diagnosis, but I’m still here at 49, living my life on my terms.

Post-surgery bra

My friends and I started a charity after my diagnosis – Força – Strength Against Cancer – and one of the amazing initiatives we run is called ‘Support’, where we fund and supply post-surgery bras for women who have had a mastectomy. Basically, ladies at Princess Anne Hospital in Southampton get a little leaflet, they get in touch, tell us the size, and we send it out. We do it just to help individuals.

Language icons

After I came to England, I was a secondary teacher for French and Spanish at GCSE level, and I ended up the head of the faculty. Unfortunately after my diagnosis I left that job as I didn’t know what would happen. But even now I love to teach. In fact I’ve recently been helping 13 Ukrainians learn English. It’s almost selfish, because it makes me feel good helping people.

Surfing

Although I've always considered myself a sun goddess and beach babe, I only recently took surfing lessons, in 2021. I even posted about it online with the caption ‘you're never too old to learn how to surf!’ It’s just a shame the water here in England is too cold, even with my super thick wetsuit. Much like the rest of my life, I'm always up for learning new things.

Lisbon

I’m originally Portuguese. My not so immediate family is still there, like my aunties and such, and whenever we get a chance we go back – usually every summer to soak up the sun.

Inspirational, positive, energetic

After being diagnosed with cancer, a lot of people find me ‘inspirational’, but I don’t really see it. I’m just trying to survive cancer. But if someone was living my life I would find them very inspirational if that makes any sense. Positive is another word used to describe me. A lot of people consider my survival a success because of my positivity. I’m quite energetic too. I live a full life.

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Count me

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During my years with MBC, I haven’t received the appropriate information to make proper treatment decisions that will impact the length of my life. And while I’ve been lucky to live well despite my diagnosis, I fear that the choices I’m making are not the best, as both my oncologist and I have been relegated to a game of guess work – there simply isn’t enough support or information available on outcomes in MBC.


Currently, no health system accurately measures the number of people living with MBC. The best estimates say 10% of all cases of breast cancer are diagnosed de novo, and approximately 30% of all cases of early breast cancer will develop into metastatic. But again, this is only another guess.


If cases of MBC are not logged, how are policymakers to understand the real impact of the disease across Europe and the world. How can funding be appropriately allocated? How can lived experiences help others?


I want this to change. For the better of everyone.


We need to capture data on those living with MBC as soon as they’re diagnosed, and track experiences so others can learn from real world experiences, and make informed decisions.


We need to be counted properly.

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